Mapping surveillance systems for HIV/AIDS in the EU/EEA : 2025.
Date: 2025-09-02
Institutions: European Centre for Disease Prevention and Control, Reyes-Urueña, Juliana
Subjects: AIDS, European Economic Area, European Union, activity report, disease prevention, disease surveillance, epidemiology, health control, health statistics, public health

ASSESSMENT

Mapping surveillance systems 
for HIV/AIDS in the EU/EEA 
2025

ECDC ASSESSMENT 

Mapping surveillance systems for 
HIV/AIDS in the EU/EEA  
2025 

 
 
This report from the European Centre for Disease Prevention and Control (ECDC) was coordinated by Juliana 
Reyes-Urueña, with the support of Anastasia Pharris. We would like to acknowledge colleagues from Santé 
Publique France, Florence Lot, Françoise Cazein and Amber Kunkel, for their invaluable insights and input in 
shaping the survey and the methods for this analysis. 

Acknowledgements  
ECDC would like to thank the following nominated operational contact points for HIV/AIDS surveillance from 
European Union/European Economic Area (EU/EEA) Member States who took the time to reply to this extensive 
survey and provide valuable feedback on the report:  

Austria: Ziad El-Khatib; Irene Kászoni-Rückerl 
Belgium:  Jessika Deblonde; Ben Serrien 
Croatia: Tatjana Nemeth Blazic; Mirjana Lana Kosanovic Licina 
Cyprus: George Siakallis; Fani Theofanous  
Czechia: Marek Malý; Vratislav Němeček; Hana Zákoucká  
Denmark: Maria Wessman  
Estonia: Hanna Maria Aavik and Jevgenia Epstein 
Finland: Kirsi Liitsola, Henrikki Brummer-Korvenkontio 
France: Françoise Cazein, Florence Lot; Amber Kunkel  
Germany: Barbara Gunsenheimer-Bartmeyer 
Greece: Chrysa Tsiara; Dimitra Paraskeva; Georgios Ferentinos  
Ireland: Derval Igoe, Kate O’Donnell; Mary Archibald  
Italy: Barbara Suligoi; Maria Elena Tosti  
Latvia: Šarlote Konova 
Liechtenstein: Esther Walser-Domjan  
Lithuania: Oksana Jučienė, Vilnelė Lipnickienė; Jurgita Pakalniškienė  
Luxembourg: Anne Vergison, Patrick Hoffmann, Joël Mossong, Yolanda Pires 
Malta: Jackie Maistre Melillo, Tanya Melillo; Elaine Lautier  
Netherlands: Eline Op de Coul, Ard van Sighem  
Norway: Robert Whittaker  
Poland: Marta Niedźwiedzka-Stadnik, Magdalena Rosinska 
Portugal: Helena Cortes Martins; Joana Bettencourt; Pedro Pinto Leite; Vítor Cabral Veríssimo  
Romania: Mariana Mardarescu 
Slovenia: Irena Klavs, Tanja Kustec 
Spain: Asuncion Diaz; Julia Del Amo  
Sweden: Maria Axelsson; Lena Dillner; Anneli Carlander; Lilian van Leest  

Suggested citation: European Centre for Disease Prevention and Control. Mapping surveillance systems for 
HIV/AIDS in the EU/EEA. Stockholm: ECDC; 2025. 

Stockholm, August 2025 

ISBN 978-92-9498-818-8 
doi: 10.2900/8381977 
Catalogue number TQ-01-25-048-EN-N 

© European Centre for Disease Prevention and Control, 2025 

Reproduction is authorised, provided the source is acknowledged 

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ECDC ASSESSMENT 

Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Contents 

Abbreviations ............................................................................................................................................... iv 
Executive summary ........................................................................................................................................ 1 
Background ................................................................................................................................................... 2 
Purpose and objectives ................................................................................................................................... 2 
Specific objectives..................................................................................................................................... 2 
Methods ........................................................................................................................................................ 2 
Framework ............................................................................................................................................... 2 
Questionnaire ........................................................................................................................................... 3 
Statistical analysis ..................................................................................................................................... 3 
Findings ........................................................................................................................................................ 4 
Organisational attributes ........................................................................................................................... 4 
Data management .................................................................................................................................... 7 
Functional attributes ................................................................................................................................. 8 
Evaluation processes ............................................................................................................................... 15 
Discussion ................................................................................................................................................... 16 
Limitations .................................................................................................................................................. 17 
Conclusion .................................................................................................................................................. 18 
References .................................................................................................................................................. 19 
Annex 1. Questionnaire ................................................................................................................................ 20 
Annex 2. Extra tables from the HIV surveillance system mapping ..................................................................... 34 

Tables 

Table 1. EU/EEA country assessment of surveillance system objectives in relation to current HIV context and 
information needs .......................................................................................................................................... 4 
Table 2. EU/EEA country assessment of HIV surveillance systems: activities of the central team or organisation 
overseeing national HIV surveillance by country, 2024 ...................................................................................... 5 
Table 3. EU/EEA country assessment of HIV surveillance systems: available resources to support clinicians and 
laboratories in effective data management by country, 2024 .............................................................................. 5 
Table 4. EU/EEA country assessment of HIV surveillance systems: available resources to support clinicians and 
laboratories in effective data management by country, 2024 .............................................................................. 7 
Table 5. EU/EEA country assessment of HIV surveillance systems: reported barriers to clinicians in reporting newly 
diagnosed HIV cases, 2024 ............................................................................................................................. 8 
Table 6. EU/EEA country assessment of HIV surveillance systems: reported barriers to laboratories in reporting 
newly diagnosed HIV cases, 2024.................................................................................................................... 9 
Table 7. EU/EEA country assessment of HIV surveillance systems: key populations identified by surveillance 
systems by country, 2024 ............................................................................................................................. 10 
Table 8. EU/EEA country assessment of HIV surveillance systems: countries' capacity for collecting mortality data, 
data sources, and update frequencies, 2024 ................................................................................................... 11 
Table 9. EU/EEA country assessment of HIV surveillance systems: estimated proportion of underreporting of HIV 
new diagnosis by clinicians, regional authorities, and laboratories by country, 2024 ........................................... 12 
Table 10. EU/EEA country assessment of HIV surveillance systems: comparison of guideline-defined transmission 
time and actual notification time for clinicians/laboratories reporting cases to the national surveillance system by 
country, 2024 .............................................................................................................................................. 13 
Table 11. EU/EEA country assessment of HIV surveillance systems: target audiences defined in national 
communication strategies by country, 2024 .................................................................................................... 13 
Table 12. EU/EEA country assessment of HIV surveillance systems: methods used to communicate surveillance 
results by country, 2024 ............................................................................................................................... 14 
Table 13. EU/EEA country assessment of HIV surveillance systems: internal evaluation of HIV surveillance systems 
by country, 2024 ......................................................................................................................................... 15 
Annex Table 1. EU/EEA country survey of HIV surveillance systems: data management procedures implemented to 
handle HIV surveillance data by country, 2024 ............................................................................................... 34 
Annex Table 2. EU/EEA country survey of HIV surveillance systems: unique identifiers utilised across HIV 
surveillance systems and reporting laboratories in each country, 2024 .............................................................. 35 
Annex Table 3. EU/EEA country survey of HIV surveillance systems: measures used to address missing data among 
reported cases by country, 2024 ................................................................................................................... 36 

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Mapping surveillance systems for HIV/AIDS in the EU/EEA  

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Abbreviations 

AIDS 
ECDC 
EU 
EU/EEA 
HIV 
OASIS 
SDG 
TESSy 
WHO 

Acquired immunodeficiency syndrome 
European Centre for Disease Prevention and Control  
European Union 
European Union/European Economic Area 
human immunodeficiency virus 
Outcome and Assessment of Surveillance Indicators and Systems 
Sustainable Development Goals 
The European Surveillance System 
World Health Organization 

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ECDC ASSESSMENT 

Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Executive summary 

Effective surveillance is crucial for tracking HIV/AIDS trends, informing prevention efforts, and guiding healthcare 
planning. Routine HIV and AIDS data collection also supports risk analysis, incidence modelling, and policy 
development, while monitoring key sustainable development goal indicators, (such as SDG 3.3 – ‘End the 
epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne 
diseases and other communicable diseases)’. Regular evaluations ensure surveillance systems remain accurate, 
efficient, and sustainable. This survey mapped and analysed HIV/AIDS surveillance across European Union (EU) 
and European Economic Area (EEA) countries and identified gaps and areas for improvement.  

The survey was based on the Outcome and Assessment of Surveillance Indicators and Systems (OASIS) 
methodology and adapted for HIV surveillance using a semi-quantitative tool with 107 questions to evaluate 
organisational and functional aspects. Organisational attributes assessed the structure and management of the 
surveillance system, including objectives, governance, resources, stakeholder involvement, and data management. 
Functional attributes evaluated acceptability, usefulness, representativeness, and timeliness in system performance. 
A questionnaire was distributed to nominated national focal points in each EU/EEA country, with responses stored 
in ECDC’s system.  

Several ares for improvement were identified:  

• 

• 

• 

• 

• 

• 

• 

Establish, regularly review and update surveillance objectives and protocols to ensure 
alignment with current public health priorities: the survey found that some EU/EEA countries have 
outdated HIV surveillance objectives and reporting protocols and a few other countries lack them entirely.  
Strengthen governance frameworks and enhance stakeholder engagement: there was an 
absence of a clearly defined governance structure or dedicated surveillance steering committee in some 
countries which limits effective coordination and decision-making. Addressing this would improve the overall 
impact of HIV surveillance. 
Improve technical infrastructure and advanced digital solutions: some countries reported gaps in 
secure electronic data transfer, system interoperability, and the integration of laboratory and 
epidemiological data, which hinders the efficiency and accuracy of HIV surveillance.  
Streamline reporting systems, enhance training, and provide stronger support for healthcare 
providers and staff in laboratories: most countries identified time constraints as the primary barrier to 
reporting. Some cited inadequate infrastructure, complex reporting processes, and insufficient training for 
clinicians and those working in laboratories as contributing factors to underreporting.  
Implement standardised approaches to measure and address underreporting: A high level of 
underreporting was noted by some countries; however, many countries reported not using any formal 
methodology to quantify its extent. There is a need to to ensure more accurate and representative 
surveillance. 
Make surveillance systems more adaptable, streamline data integration, and leverage new 
health technologies: Many countries struggle to collect key data such as death records, dates of death, 
AIDS diagnoses after an HIV diagnosis, and previous positive cases, revealing significant gaps in HIV 
surveillance.  
Regular evaluation and continuous improvement of surveillance systems: The lack of regular 
internal and external evaluations in several countries limits opportunities for performance improvement, 
showing the need for systematic assessment processes to ensure HIV surveillance systems remain effective, 
reliable, and adaptable. 

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Background 

Surveillance is critical to understanding the epidemiology of HIV and AIDS, and collecting routine surveillance data, 
including HIV and AIDS case surveillance, can be used to inform and evaluate HIV prevention and response 
measures and to support healthcare planning. Surveillance data on HIV and AIDS diagnoses supports risk analysis, 
facilitates modelling for estimating HIV incidence and the undiagnosed fraction, and enables trend monitoring both 
overall and within specific key populations. Additionally, it informs policy recommendations based on 
comprehensive risk assessments and supports the monitoring of key sustainable development goals (SDG) targets 
such as 3.3 (‘End the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat 
hepatitis, water-borne diseases and other communicable diseases’) as well as HIV targets within the WHO’s 
Regional Action Plan [1]. EU countries submit annual HIV surveillance data to The European Surveillance System 
(TESSy), where they are analysed by the European Centre for Disease Prevention and Control (ECDC) and 
published in the annual HIV surveillance report [2], contributing to a coordinated regional understanding of the 
epidemic. 

Surveillance systems require regular evaluation to ensure that they are operational, efficient, accurate and  
effectively meet surveillance objectives. Periodic assessments enable the identification of potential shortcomings, 
allowing for timely adjustments and enhancements to optimise system performance. By adopting a systematic 
approach to evaluation, stakeholders can proactively address challenges, ensure the reliability of data collection, 
and streamline resource allocation. Regular evaluation underscores the significance of maintaining surveillance 
systems that not only meet operational standards, but prove to be efficient and economically sustainable over time. 

Purpose and objectives 

The objective of this survey is to comprehensively characterise and map the existing surveillance systems for 
HIV/AIDS within the EU/EEA. This analysis aims to identify key components, methodologies, and data sources 
utilised in the current systems. The scope encompasses an examination of the overall structure, data collection 
methods and reporting mechanisms of HIV/AIDS across the EU/EEA region. This analysis takes place within the 
context of the new EU Regulation on Serious Cross-Border Threats to Health (2022)i, which offers an opportunity 
for ECDC and national surveillance authorities to redefine the scope of infectious disease surveillance. The 
regulation underscores the importance of enhancing Member States' capacity for data collection and data-sharing, 
and calls for the development of disease-specific European surveillance standards (Chapter III, Article 13) [3]. 

Specific objectives 

• 

• 

• 
• 

Conduct a detailed examination of the current existing surveillance systems for HIV/AIDS, focusing on the 
methodologies, technologies, and data collection mechanisms in place. 
Analyse and characterise the protocols and procedures employed in data collection within surveillance 
systems, including data sources, frequency of reporting, and responsible entities. 
Assess the organisational and functional attributes of HIV surveillance systems. 
Benchmark existing surveillance systems to identify current practices and standards in HIV/AIDS 
surveillance, to highlight areas for improvement. 

Methods  

Framework  

The framework used was based on the OASIS methodology and adapted to the specific situation of HIV [4]. We 
developed a semi-quantitative questionnaire to display multilevel results in a standardised way. A set of 107 
questions assessed organisational and functional attributes of HIV surveillance systems. The tool was adapted in 
February–March 2024 with input from national focal points specialising in HIV surveillance. To ensure its relevance, 
clarity, and practical applicability, the tool was then pre-tested and validated in collaboration with a selected group 
of these focal points and experts. 

i Regulation (EU) 2022/2371 of the European Parliament and of the Council of 23 November 2022 on serious cross-border threats 
to health and repealing Decision No 1082/2013/EU.  

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Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Organisational attributes 

These attributes include an evaluation of the organisational structures and management of the surveillance system 
such as: 

• 
• 

• 

the existence of clear, relevant objectives. 
the existence of a steering committee and clearly defined roles and responsibilities and human resources, 
stakeholder involvement. 
the existence of effective processes for data management and dissemination of information. 

Functional attributes  

Functional attributes, which in this assessment include acceptability, usefulness, representativeness and timeliness, 
are described below.  

• 

• 

• 

• 

Acceptability refers to the willingness of people and organisations to participate in the surveillance 
system, and the degree to which each of these users is involved in the surveillance [1]. This attribute is a 
critical function of a potent HIV surveillance system. To limit the under-reporting of a new HIV diagnosis 
and to identify the best ways to improve the current surveillance system, it is crucial to assess stakeholders’ 
willingness to participate in the system.  
Usefulness refers to HIV surveillance system capacity to provide valuable, relevant, and actionable 
information to support public health efforts in understanding, preventing, and managing HIV infections. A 
surveillance system's usefulness is determined by the value of the data it generates in informing evidence-
based decision-making and public health interventions. This attribute encompasses the system's ability to 
track trends, identify populations at higher risk of acquiring HIV, monitor the impact of prevention and 
treatment programs, and contribute to the overall improvement of HIV-related outcomes. A highly utility-
focused HIV surveillance system ensures that the data collected are not only accurate and timely but also 
serve the specific needs of people living with HIV, policy-makers, healthcare professionals, researchers, and 
other stakeholders involved in the prevention and control of HIV. This attribute emphasises the practical 
and meaningful application of surveillance data in guiding strategies and interventions to effectively address 
the HIV epidemic. 
Representativeness is the extent to which the characteristics of the population of interest are reflected 
by the population included in the surveillance activity and may include geographical coverage or inclusion of 
key populations.  
Timeliness is defined as the time between any two defined steps in a surveillance system, the time points 
chosen are likely to vary depending on the purpose of the surveillance activity.  

Questionnaire  

The questionnaire was distributed via a link to the national surveillance focal point of each country. Information 
from each country was provided by a designated person responsible for collating all the required data. The 
information provided by countries was stored in ECDC's system. 

Statistical analysis  

Descriptive statistics were calculated to summarise key aspects of the HIV surveillance systems in each country. 
This involved calculating frequencies and percentages for surveillance attributes. Comparative analysis was 
performed to identify similarities and differences in HIV surveillance processes and attributes across countries.  

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Findings  

Out of the 30 EU/EEA countries, 25 responded (Austria, Belgium, Croatia, Cyprus, Czechia, Denmark, Estonia, 
Finland, France, Germany, Greece, Ireland, Italy, Liechtenstein, Lithuania, Luxembourg, Malta, Netherlands, 
Norway, Poland, Portugal, Romania, Slovenia, Spain and Sweden) by 6 June 2024. 

Organisational attributes 

Structure, documentation, and composition of the HIV surveillance 
systems 

Among the 25 countries that responded, 22 indicated the presence of a national network, where decisions 
regarding the surveillance system are made at the national level. Sweden reported a mixed approach, where 
coordination is led by regional authorities but final decisions rest nationally. In Luxembourg, coordination involves 
laboratories, and the specialised national infectious diseases hospital unit, and public health authorities, whereas in 
Spain, HIV surveillance at the national level is overseen by national authorities, while regional authorities manage 
implementation and data collection within their territories.  

Twenty-three countries have defined objectives for their HIV surveillance systems. Austria and Lithuania did not 
have defined objectives. Eight countries reported that their objectives remain fully aligned with current HIV 
information needs. Eleven countries indicated general alignment but noted minor deficiencies. Four countries 
acknowledged that, while their objectives are broadly aligned with current needs, there are significant gaps or 
major deficiencies that require attention (Table 1). Fifteen countries responded that they are planning to update 
their HIV surveillance objectives, six replied that there were no plans, and the remaining countries did not respond 
to the question (data not shown).  

Regarding the legal framework and the document defining the roles of the actors involved in the surveillance 
system, all 25 countries indicated that their HIV surveillance system is formalised within national legislation. 
Nineteen countries reported having a document that comprehensively defines the roles of different partners within 
the surveillance network and six do not have any such document (data not shown).  

Table 1. EU/EEA country assessment of surveillance system objectives in relation to current HIV 
context and information needs 

The objectives are still in accordance with the 
current context and needs for information about 
HIV 
Cyprus 
Czechia 
Finland 

The objectives are still in accordance with the 
current context and needs for information about 
HIV but with minor deficiencies 
Belgium 
Croatia 
Denmark 

The objectives are in accordance with the 
current context and needs for information 
about HIV but there are major deficiencies 
Germany 
Portugal 
France 

Italy 
Netherlands 
Romania 
Slovenia 
Sweden 

Estonia 
Greece 
Ireland 
Liechtenstein 
Luxembourg 
Norway 

Poland 
Spain 

Malta 

Austria and Lithuania did not respond to this question. 

Eleven countries reported having a steering committee in place, defined as the entity playing a pivotal role in 
setting the orientation and objectives of the network, as well as making strategic decisions. It comprises the main 
decision-making bodies involved in surveillance. Conversely, 14 countries do not have this group established. 

Eighteen countries reported having a documented surveillance protocol for reporting cases within their respective 
countries. Conversely, three countries (Austria, Cyprus and Greece) lack such a protocol. Additionally, the person 
reporting for Malta, the Netherlands, and Norway was uncertain about the existence of such a document. 
Furthermore, one county did not respond to this question. Among those countries with a reporting protocol in 
place, 13 stated that their protocols are up to date and aligned with the current HIV context, whereas Estonia, 
France, Italy and Luxembourg stated that their protocols were not up to date. Twenty-three countries reported 
using the ECDC definition for HIV, while France and Sweden employ a distinct definition.  

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Mapping surveillance systems for HIV/AIDS in the EU/EEA  

All countries responded that they have a centralised team or organisation responsible for overseeing the entire HIV 
surveillance system. The activities carried out by the centralised team or organisation overseeing the entire HIV 
surveillance system include data analysis (25 countries), communication of results (25 countries), data 
management (24 countries), data validation (22 countries), and, to a lesser extent, modelling (i.e. generating 
incidence estimates, or people living with HIV estimates) (17 countries) and other activities that included following 
up on observational cohort studies, responding to media inquiries in coordination with the Ministry of Health, and 
actively engaging in service provision for policy-makers and other relevant stakeholders (four countries) (Table 2).  

Table 2. EU/EEA country assessment of HIV surveillance systems: activities of the central team or 
organisation overseeing national HIV surveillance by country, 2024 

Country 

Data management   

Data 
validation  

Data 
analysis     

Modelling (i.e. generating 
incidence estimates, or people 
living with HIV estimates)   

Communication of 
results 

Other  

Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

    Green indicates that the activity was reported by the country 
    White indicates that the activity was not reported by the country 

Tools and technical resources  

Twenty-one countries have a case notification form in place for reporting, 14 countries offer direct database access 
for reporting, and six countries have dashboards to display data to clinicians and laboratories (Table 3). It is important 
to note that no country provides a fee or incentive to clinicians and/or laboratories for reporting a new case. 

Table 3. EU/EEA country assessment of HIV surveillance systems: available resources to support 
clinicians and laboratories in effective data management by country, 2024 

Case notification form 

Direct access point for clinics and/or laboratories to the database 

Dashboards 

Other 

Country  
Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg* 
Malta 
Netherlands 
Norway 
Poland 

5 

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
Mapping surveillance systems for HIV/AIDS in the EU/EEA  

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Case notification form 

Direct access point for clinics and/or laboratories to the database 

Dashboards 

Other 

Country  
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

    Green indicates that the activity was reported by the country. 
    White indicates that the activity was not reported by the country. 
* In Luxembourg, laboratories submit electronic notifications. However, there is currently no medical case notification system in place. 

Countries highlighted limitations in their databases, including the challenges of managing clinic network study 
cohorts originally established for research purposes and overseen by clinicians. In such cases, as seen in Austria, 
clinicians lack a legal mandate to report new HIV diagnoses. As a result, data-sharing with national surveillance 
systems relies on mutual understanding rather than a formal legal framework, limiting the consistency and 
completeness of data collection. There is agreement among some countries on the need for an automated data 
visualisation platform. Concerns include the absence of automatic statistical analysis and limited communication 
with stakeholders. Incomplete submissions by clinicians result in missing data, and data protection frameworks 
restrict export of data. Disparities in reporting infrastructure and separate databases for HIV and AIDS cases are 
noted, alongside slow system upgrades. 

Twenty-four countries reported having a centralised database within their national surveillance system. In addition, 
13 countries have implemented an electronic reporting system that automatically gathers and sends data to the 
centralized database. However, Cyprus, Czechia, Germany, Lithuania, Malta and Slovenia rely on traditional paper-
based reporting forms, which healthcare facilities submit to regional and national health departments. Austria, 
Luxembourg, Ireland, the Netherlands, Portugal, and Spain have alternative systems in place to collect and 
aggregate data at the national level, each employing a distinct approach to implementation. These six countries 
use diverse methods for transferring data to their national surveillance systems.  

In Austria, an electronic reporting system is employed, transmitting data directly to the cohort centralised 
database. Laboratories in Austria submit the number of HIV tests and positives results through paper-based 
reporting forms, which are then forwarded to the Ministry of Health. In Ireland, laboratories electronically notify 
HIV cases to the Computerised Infectious Disease Reporting system, with enhanced data manually inputted into 
the system. Luxembourg relies on its national infectious diseases unit's hospital database for data management. In 
the Netherlands, people diagnosed with HIV are notified by the country's HIV treatment centres, with data sourced 
from electronic patient files, using both manual entry and automated import methods. Portugal uses an electronic 
data collection system, with data aggregation performed through registration in a separate manual database. 
Lastly, Spain gathers data through databases submitted by public health regional autonomous communities. 

Countries with laboratories reporting to their HIV surveillance 
systems  

From the 19 countries where laboratories were reporting at the time of the questionnaire, Finland, Luxembourg, 
Malta, Norway, and Romania have automated reporting systems. Conversely, in Czechia, France, Germany, Greece, 
Lithuania, Poland and Slovenia, reporting from laboratories require manual entry by laboratory staff, however in 
Poland reporting methods vary by laboratory, notifications are mostly sent in paper form, either generated from 
local systems or manually completed, but transition to electronic reporting is planned for 2025, with options for 
automatic, semi-automatic, or manual data entry into the central database. In Belgium, Denmark, Estonia, Ireland, 
and Liechtenstein, reporting is semi-automated with some manual input required. Additionally, in Portugal and 
Sweden, the reporting methods vary depending on the laboratory. In Portugal, although laboratory reporting is 
always electronic it can be done automatically (webservice/interface) or by manual entry at a specific webpage.  

The proportion of laboratory data that can be linked with epidemiological data is approximately 51-75% in France, 
Estonia and Poland and over 75% in the 13 remaining countries, except for Malta and Portugal where the 
proportion is unknown.  

The primary barriers to linking laboratory data, as reported by countries, vary significantly. In Czechia, the main 
obstacles include a lack of interoperability between systems and limited resources for data integration. In France, 
the primary barrier is underreporting by clinicians, which results in the absence of epidemiological data to link with 
some laboratory data. Additionally, both Czechia and France reported technical challenges in data matching as a 
significant barrier. Germany identifies legal or regulatory restrictions as its main issue, while Luxembourg and 
Romania report that they struggle primarily with the absence of standardised protocols. 

6 

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
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Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Eight countries (Belgium, Estonia, Finland, France, Ireland, Liechtenstein, Norway, and Sweden) report that they 
have established secure electronic data systems dedicated to transferring laboratory data to the national 
surveillance system. Conversely, Czechia, Denmark and Lithuania rely on manual data entry into surveillance 
databases for data transmission. In Greece, Luxembourg, Portugal, and Romania, data transfer occurs through 
automated interfaces between laboratories and the surveillance system. In Germany and Malta, laboratories submit 
paper forms of reports for data transmission and in Poland, the transition to electronic reporting is planned for 
2025, offering options for automatic, semi-automatic, or manual data entry into the central database, enhancing 
data linkage between laboratory and epidemiological records.  

Data management  

Twenty-three countries reported having structured data management procedures in place, which include data 
validation and secure storage within databases. Cyprus and Malta indicated they do not have such procedures 
established. In Annex 3 Table 1 there is a concise overview of the data management procedures implemented by 
countries to handle HIV surveillance data.  

Countries face numerous challenges in data analysis, including limited number of variables, time constraints, and 
understaffing. In some countries fragmented healthcare systems and data protection regulations further complicate 
analysis. Shortfalls in resources and personnel exacerbate these challenges, particularly in accessing complete 
clinical datasets (Table 4). 

Table 4. EU/EEA country assessment of HIV surveillance systems: available resources to support 
clinicians and laboratories in effective data management by country, 2024 

Data Collection: 
Gathering HIV-
related information 
from various sources 
such as healthcare 
facilities, 
laboratories, and 
community outreach 
programs 

Data Cleaning: 
Reviewing the 
collected data to 
identify and 
correct errors, 
inconsistencies, 
and missing 
entries 

Data 
Verification: 
Confirming the 
accuracy of the 
data by cross-
referencing with 
other reliable 
sources or 
employing 
validation 
techniques 

Quality 
Assurance: 
Implementing 
measures to 
ensure data 
quality and 
reliability 
throughout the 
validation 
process 

Documentation: 
Thoroughly 
documenting the 
validation process, 
including any 
discrepancies and 
steps taken to 
address them, for 
transparency and 
accountability 

Continuous 
Monitoring: 
Continuously 
monitoring and 
assessing the 
surveillance 
system to identify 
areas for 
improvement and 
ensure ongoing 
data quality 
assurance 

Country  

Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Poland 
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

    Green indicates that the activity was reported by the country. 
    White indicates that the activity was not reported by the country. 

7 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Mapping surveillance systems for HIV/AIDS in the EU/EEA  

ECDC ASSESSMENT 

Various unique identifiers, including social health insurance numbers, pseudonymised national register numbers, 
personal identification numbers, names, and social security numbers, are used in HIV surveillance systems. Patient-
specific data such as names, dates of birth, and specimen identification numbers (IDs) are also employed. In 
Germany, alphanumeric HIV codes are being transitioned to electronic systems. For instance, in one country, 
identification methods may vary regionally, including ID numbers, dates of diagnosis, and could be also free text 
(Annex 1 Table 2). In 12 countries, the identifier utilised in surveillance systems can be employed to trace back to 
personal information from other sources. Conversely, in 10 countries, linking back with other sources of information 
using the identifier is not possible. In Spain, identifiers such as social security numbers or clinical record numbers 
are used at regional level for data management, while in Poland linkage is impossible due to legal and technical 
constraints, as cases are often reported without a national ID, the primary identifier in the healthcare system.  

Out of the 25 countries surveyed, 22, have the capability to identify and eliminate duplicates within their 
surveillance systems. Sweden faces challenges in this regard, as it is unable to identify duplicates. Poland uses a 
manual process to eliminate duplicates, relying on date of birth, Universal Electronic System for Registration of the 
Population (PESEL) number, HIV test number and/ or case codes. Greece did not respond to this question. 

The types of unique identifiers used by laboratories to identify samples vary significantly across countries, as 
illustrated in Annex 1 Table 3. All countries with laboratories reporting can successfully identify two positive tests 
belonging to the same person. 

Functional attributes  

Acceptability  

Acceptability was not directly assessed in this survey, as this mapping is based on a qualitative assessment 
provided by the national focal point of each country. Hence, evaluating the willingness of people (clinicians and/or 
laboratories) and organisations who use or provide data to accept the system and participate in it was not 
performed. Nevertheless, indirect questions were included to evaluate the primary barriers to high acceptability 
among clinicians and laboratories. The primary barriers to clinicians and laboratories reporting newly diagnosed 
HIV cases to the surveillance system include time constraints (19 countries), inadequate reporting infrastructure 
(seven countries), followed by the complexity of the reporting process (five countries), lack of training (six 
countries). For countries where laboratories report newly diagnosed HIV cases to the surveillance system, the 
reported barriers were time constraints (five countries) and the complexity of the reporting process (three 
countries) (Tables 5 and 6).  

Specific barriers were reported by other countries. For example, Austria reported that clinicians lack a legal 
mandate to report new HIV diagnoses. However, such cases can still be identified through cohort studies, as the 
national surveillance system relies on a clinical cohort. Additionally, clinicians may face time constraints and 
insufficient reporting infrastructure, which can hinder effective data collection. While in Ireland it was reported that 
data management resources are limited, with reliance on paper-based records and the absence of electronic health records. 

Table 5. EU/EEA country assessment of HIV surveillance systems: reported barriers to clinicians in 
reporting newly diagnosed HIV cases, 2024 

Time 
constraints 

Privacy 
concerns 

Complexity of 
reporting 
process 

Lack of 
training 

 Inadequate 
reporting 
infrastructure 

 Fear of 
stigma 

 Other 

 Not 
Applicable 

Clinicians 

  Country  
Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 

8 

  
  
  
  
  
  
  
  
  
 
 
 
 
 
 
 
 
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
ECDC ASSESSMENT 

Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Time 
constraints 

Privacy 
concerns 

Complexity of 
reporting 
process 

Lack of 
training 

 Inadequate 
reporting 
infrastructure 

 Fear of 
stigma 

 Other 

 Not 
Applicable 

Clinicians 

  Country  
Norway 
Poland  
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

    Green indicates that the activity was reported by the country 
    White indicates that the activity was not reported by the country 
     Grey indicates that clinicians do not report to the HIV surveillance system. 

Table 6. EU/EEA country assessment of HIV surveillance systems: reported barriers to laboratories in 
reporting newly diagnosed HIV cases, 2024 

 Country  

Time 
constraints 

Privacy 
concerns 

Complexity of 
reporting 
process 

Laboratories  

Lack of 
training 

 Inadequate 
reporting 
infrastructure 

 Fear of 
stigma 

 Other 

Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Poland  
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

    Green indicates that the activity was reported by the country 
    White indicates that the activity was not reported by the country 
     Grey indicates that laboratories do not report to the HIV surveillance system. 
Note: In Spain, laboratories report to the HIV surveillance system at the regional level, but not at the national level. In Belgium: 
clinicians report care data and therefore contribute to the surveillance system. However, they do not report newly diagnosed HIV cases. 

Usefulness  

Usefulness refers to the capacity of a surveillance system to provide valuable, relevant, and actionable information 
supporting public health efforts in understanding, preventing, and managing HIV infections, as described in the 
methods section. In this context, we explore the system's capacity to identify key populations at higher risk of 
acquiring HIV (detailed under the representativeness attribute) and its efficacy in identifying previous positive 
diagnosesii for individual analysis. Furthermore, usefulness extends to the system's capability to incorporate AIDS 
data into the HIV surveillance system, facilitating the notification of AIDS cases after HIV notifications, and 
providing information related to mortality.  

ii Previous positive diagnoses are defined as an HIV diagnosis made either abroad or in another setting within the reporting 
country on any occasion before the current year of reporting. Some countries report previous positive HIV cases as they enter, 
re-enter or re-engage with the care system in the reporting country 

9 

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
 
  
  
  
  
  
  
  
  
  
  
  
  
  
 
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
 
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
 
 
Mapping surveillance systems for HIV/AIDS in the EU/EEA  

ECDC ASSESSMENT 

All countries have the capacity to identify men who have sex with men, people who have injected drugs and 
migrants, whereas 14 countries can provide information on transgender people, 18 countries can provide 
information for sex workers, and nine can monitor people who have been in prison (Table 7).  

Table 7. EU/EEA country assessment of HIV surveillance systems: key populations identified by 
surveillance systems by country, 2024 

Men who 
have sex 
with men 

People 
who have 
injected 
drugs 

Sex workers   

Transpeople 

People 
who have 
been in 
prison 

Migrants  

Other 

  Country  

Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania  
Luxembourg 
Malta 
Netherlands 
Norway 
Poland  
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

          Grey indicates countries that did not provide information 
          Green indicates the key populations identified by surveillance systems by country 
          White indicates those key populations which are not identified by surveillance systems by country 

In terms of previous positive HIV diagnoses, 19 countries have the capability to identify them. Luxembourg, 
Poland, Spain and Sweden face challenges in this regard, as they are unable to identify previous positive 
diagnoses. Two countries did not respond to this question. 

Twenty-two countries can collect AIDS data occurring downstream after HIV notification. In Denmark for instance, 
AIDS is no longer a notifiable condition. However, historical AIDS notifications are being linked to current HIV 
notifications, and new AIDS-defining diagnoses continue to be monitored annually, despite the removal of 
mandatory reporting. Two countries face challenges in this regard. In Portugal, the system requires a new 
notification for AIDS, separate from HIV, in the electronic reporting system, that is then matched with the original 
HIV notification, allowing the AIDS-stage related data to be added. Conversely, in Ireland, the system is designed 
to collect AIDS-defining illnesses at the time of HIV diagnosis, as HIV is notifiable, not AIDS. One country did not 
respond to this question. 

Thirteen countries can retrieve both the date and cause of death whereas eight countries only retrieve the date of 
death. Italy stands out as the only country able to retrieve the cause of death without the date of death (Table 8). 
Sources of information used to retrieve mortality data include manual notification systems, involving individual 
searches across various data sources to determine vital status, as well as national death registries, entailing linkage 
with national death registries or vital statistics systems, other sources were reported by three countries but were 
not specified. Nine countries updated death data annually, while 13 countries did not specify the periodicity for the updates. 

10 

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
   
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
 
 
 
 
 
 
 
  
  
  
  
  
  
  
  
  
  
  
  
  
  
ECDC ASSESSMENT 

Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Table 8. EU/EEA country assessment of HIV surveillance systems: countries' capacity for collecting 
mortality data, data sources, and update frequencies, 2024 

Country  

Austria 

Belgium 
Croatia 
Cyprus 
Czechia 

Denmark 

Estonia 
Finland 
France 

Germany 
Greece 

Ireland 

Italy 

Liechtenstein 
Lithuania 

Luxembourg 
Malta 

Netherlands 

Norway 
Poland  
Portugal 

Romania 
Slovenia 

Spain 

Sweden 

Date of 
death 

Cause of 
death 

Source of information used to retrieve mortality 
data 

National Death Registries: linkage with national 
death registries or vital statistics systems 
Other 
Other 
Not provided 
Manual notification systems: searching various 
data sources to determine vital status 
National Death Registries: linkage with national 
death registries or vital statistics systems 
N/A 
Not provided 
Date of death is collected via mandatory manual 
notification 
N/A 
National Death Registries: linkage with national 
death registries or vital statistics systems 
The date and cause of death are included in the 
enhanced surveillance forms and are reported only 
if the death occurred at the time of HIV diagnosis. 
National Death Registries: linkage with national 
death registries or vital statistics systems 
Not provided 
National Death Registries: linkage with national 
death registries or vital statistics systems 
N/A 
Date and cause of death is extracted from national 
mortality registry 
Health Records and Medical Facilities: linkage with 
health records from hospitals, clinics, and other 
medical facilities 
Not provided 
N/A 
Notification of HIV, AIDS, and death among people 
living with HIV is mandatory. The system requires a 
new notification for death, that is then matched with 
the original HIV notification and date of death 
registered in the database  

Other 
HIV Surveillance system and the National Death 
Registries 
Mortality data come from regional HIV surveillance 
systems. It is not possible to link the national 
database with the vital statistics system 
Not provided 

Updating frequency 

Annual 

Annual 
No periodicity specified 
Annual 
No periodicity specified 

Annual 

No periodicity specified 
Annual 
No periodicity specified 

N/A 
Weekly 

No periodicity specified 

Annual 

No periodicity specified 
Annual 

No periodicity specified 
N/A 

No periodicity specified 

No periodicity specified 
N/A 
No periodicity specified 

Annual 
No periodicity specified 

No periodicity specified 

No periodicity specified 

          Green indicates countries' capacity for collecting mortality data  
          White indicates countries lack mortality data 
          Grey indicates countries that did not provide information 
N/A: Not applicable  

Countries have reported various barriers to updating the vital status of people living with HIV in the surveillance 
system. Germany highlights delays in receiving official death certificates or mortality reports from relevant 
authorities. Ireland and Luxembourg cite insufficient human, financial, or technological resources as challenges. 
Additionally, there is a lack of interoperability among systems, hindering the seamless flow of vital status updates. 
Luxembourg also points out legal and regulatory constraints. 

11 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
Mapping surveillance systems for HIV/AIDS in the EU/EEA  

ECDC ASSESSMENT 

Representativeness  

Regarding the coverage of the HIV surveillance system, 23 out of 25 countries reported 100% geographical 
coverage. Austria stated that its surveillance system covers only 75% of the territory. France, Germany, Estonia, 
and Austria were among the countries with the highest overall underreporting in 2024 (Table 9). Despite most 
countries in the survey acknowledging the existence of underreporting, 14 countries indicated that they do not 
conduct any assessment or estimation of underreporting. In contrast, three countries (Denmark, Finland and 
Germany) estimate the level of underreporting through statistical modelling and extrapolation based on known 
cases and surveillance data. Romania bases its estimation on analysing trends in healthcare-seeking behaviour and 
comparing them with reported case counts, while Czechia, Estonia, France, and the Netherlands use other 
methods. Belgium does not make such estimations because its surveillance system is designed to be 
comprehensive and exhaustive.  

Table 9. EU/EEA country assessment of HIV surveillance systems: estimated proportion of 
underreporting of HIV new diagnosis by clinicians, regional authorities, and laboratories by country, 2024 

Country  

Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Poland 
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

Underreporting in 
general (%) 
36 
0 
1 
0 
2 
15 
- 
4 
43 
30 
0 
5 
10 
0 
5 
0 
5 
3 
0 
- 
- 
10 
0 
- 
1 

Underreporting by 
clinicians (%) 
- 

Underreporting by 
regional authorities (%) 
- 

Underreporting by laboratories 
(%) 
- 
 0 

- 
0 
- 
15 
50 
20 
56 
40 
- 
0 
10 
2 
- 
0 
- 
3 
- 
- 
- 
90 
0 
- 
1 

- 

0 
5 

5 

- 

- 
- 
90 

- 
1 

1 
10 
- 
0 
52 
20 
0 
5 

0 
5 
0 
5 

0 
- 
- 
0 
0 

2 

      Gray indicates that countries lack intermediary regional authorities responsible for reporting or collecting data, and/or 
laboratories contributing data to the surveillance system.  
-  Data not provided  
Note: Countries use varying methods to assess or estimate underreporting, with many having no formal methodology. Therefore, 
comparisons between countries should be interpreted with caution. 

Timeliness  

In terms of timeliness, we only asked for the time it takes for clinicians to report cases to the national surveillance 
system. In Belgium, however, timeliness refers to the duration laboratories take to report, as they do not submit 
data per diagnosis, instead, they report all diagnoses from the previous year in a single annual batch. In this 
regard, 14 countries reported having existing guidelines specifying a standard time frame for the maximum 
transmission time of case reporting. Conversely, 10 countries do not have this standardised time frame defined in 
any document. Austria and Luxembourg, where the surveillance system is based on cohort data, find this type of 
standardised time not applicable (Table 10).  

The mean time stipulated in guidelines for the transmission of reports from clinicians to the national surveillance 
systems among the nine countries that provided this information was 62 days (range: 1-365). However, the actual 
mean notification time was 137 days (range: 0-180). Notably, among the countries that reported a time frame for 
notification, there were no delays observed in reporting from clinicians. 

12 

 
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
ECDC ASSESSMENT 

Mapping surveillance systems for HIV/AIDS in the EU/EEA  

Table 10. EU/EEA country assessment of HIV surveillance systems: comparison of guideline-defined 
transmission time and actual notification time for clinicians/laboratories reporting cases to the 
national surveillance system by country, 2024 

Country  
Austria 
Belgium* 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Poland 
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

Guideline-defined transmission time in days 
- 
- 
- 
15 
- 
- 
1 
7 
- 
- 
- 
- 
150 
7 
7 
- 
- 
- 
- 
1 
1 
10 
3 
- 
1.5 

Current notification time (in mean days) 
- 
- 
180 
5 
- 
60 
- 
- 
100 
30 
0 
- 
45 
- 
30 
- 
30 
- 
- 
40 
122 
30 
90 
- 
2 

Data not provided  
* In Belgium, a predefined data collection period is established during which laboratories upload data from the previous year. As 
a result, these timeliness metrics do not apply to their reporting system. 

Communication methods 

Twenty-two countries regularly publish reports and/or scientific articles on surveillance results obtained from their 
respective surveillance systems. Luxembourg does not publish reports, and two countries did not respond to this 
inquiry. Among the respondents, 17 countries report their results annually. The Netherlands and Romania release 
reports every six months, and Malta issues them quarterly. Czechia and Ireland provide monthly updates on 
surveillance findings. 

The dissemination of surveillance results and data typically target various audiences, including the general public, 
clinicians, civil society, researchers, politicians, and key populations. Neighbouring countries are among the least 
targeted population for communication purposes (Table 11).  

Table 11. EU/EEA country assessment of HIV surveillance systems: target audiences defined in 
national communication strategies by country, 2024 

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Greece 
Ireland 

13 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
Mapping surveillance systems for HIV/AIDS in the EU/EEA  

ECDC ASSESSMENT 

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  Country  

Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Poland 
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

          Green indicates targeted audiences defined in national communication strategies by country 
          White indicates non-targeted audiences defined in national communication strategies by country 

To communicate surveillance results, countries use websites (24 countries) and epidemiological bulletins or reports 
(22 countries), followed by scientific articles (15 countries), social media (nine countries), and dashboards (seven 
countries) (Table 12). 

Table 12. EU/EEA country assessment of HIV surveillance systems: methods used to communicate 
surveillance results by country, 2024 

Dashboards 

Epi bulletins or 
reports 

Scientific articles 

Social media 

Website 

Other 

 Country  

Austria 
Belgium 
Croatia 
Cyprus 
Czechia 
Denmark 
Estonia 
Finland 
France 
Germany 
Greece 
Ireland 
Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 
Netherlands 
Norway 
Poland  
Portugal 
Romania 
Slovenia 
Spain 
Sweden 

          Green indicates methods used to communicate surveillance results by country 
          White indicates methods not used to communicate surveillance results by country  

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Evaluation processes 

Internal evaluation  

Seven countries reported having conducted an internal evaluation, while 13 countries have never done so. 
Additionally, for two countries, the person responding was uncertain whether such evaluations had been 
conducted, and one country did not respond to this question. The methods employed vary, but they are primarily 
based on ECDC guidelines. These evaluations have been carried out between 2015 and 2024, encompassing 
various surveillance attributes (Table 13). 

Table 13. EU/EEA country assessment of HIV surveillance systems: internal evaluation of HIV 
surveillance systems by country, 2024 

Country  
Austria 

Internal evaluation  

Method used  

Date 

Attributes  

Not provided  

Belgium 

Yes 

Internal audit  

Data collection, internal 
management and 
procedures 

The evaluation was carried out as part of fellowship 
programme of the European Centre for Disease 
Prevention and Control (ECDC) in field epidemiology 
(EPIET), according to ECDC guidelines and standards, in 
cooperation with an ECDC mentor from EPIET 
programme. 

01/06/2018 

Timeliness, usefulness, 
representativeness, 
completeness, simplicity 

Croatia 

Yes  

Cyprus 
Czechia 
Denmark 

Estonia 
Finland 

Don’t know  
No  
Don’t know  

No  
No  

France 

Yes  

Based on CDC and ECDC methods 

01/07/2019 

Usefulness, simplicity, 
acceptability, timeliness, 
stability, flexibility, data 
quality, representativeness, 
sensitivity, positive predictive 
value 

Germany 
Greece 

Ireland 

Italy 
Liechtenstein 
Lithuania 
Luxembourg 
Malta 

No  
No  

Yes  

No  
No  
No 
No  
No  

EPIET Evaluation  

15/01/2015 

Description, sensitivity, 
timeliness  

Netherlands 

Yes  

Document study, interviews, adding/adapting data 
collection protocols 

Norway 

Yes  

Portugal 

No  

In accordance with ECDC guidelines for surveillance 
system evaluation  

27/01/2016 

Romania 

Yes  

Regular assessment of the HIV data (quarterly) and 
collaboration with the National Public Health Institute     

31/03/2024 

Slovenia 
Spain 
Sweden 

No  
No  
No  

All aspects of the 
surveillance system, 
including data collection and 
internal management, are 
evaluated in a 3-year cycle 
Completeness, timeliness, 
sustainability, cost and 
resources, usefulness, 
flexibility, feasibility, 
acceptability 

The data registration system 
through the reporting charts; 
evaluation of the 
epidemiological, clinical, 
laboratory data, staging, 
treatment data    

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External evaluation  

External evaluations have been conducted by Belgium (in 2024), France (in 2024), Germany (in 2024), the 
Netherlands (in 2015), and Portugal (in 2009). These evaluations covered various attributes, including usefulness, 
acceptability, representativeness, flexibility, sensitivity, timeliness, data collection, use of data, internal 
management, data completeness, simplicity, acceptability, and stability. It is noteworthy that Germany based its 
evaluation on the SDG core indicators, meaning the assessment had a broader scope, covering all relevant 
systems—including the HIV surveillance system—to inform the development of SDG indicators. 

Discussion  

This survey highlights that HIV surveillance systems in EU/EEA countries collect data using diverse methods and 
methodologies. Although the systems differ across EU/EEA countries, they have both similar and unique challenges 
based on their specific attributes. This survey characterised the operational and functional attributes of the HIV 
surveillance systems in EU/EEA countries and described the current challenges of these systems which are critical 
for disease prevention, programme planning and management, health promotion, quality improvement and 
resource allocation. Ultimately, these systems play a crucial role in monitoring key SDG 3.3 HIV targets [5] and 
targets within the WHO’s Regional Action Plan [6]. 

Shifting migration patterns and new paradigms, such as pre-exposure prophylaxis for HIV (PrEP) and HIV 
treatment as prevention and test-and-treat, have transformed the dynamics of HIV surveillance, highlighting the 
need to incorporate new data elements that were previously not considered. This context may help explain why, 
despite progress, many HIV surveillance systems in the EU/EEA report limitations in their current objectives. While 
eight countries indicated that their objectives remain fully aligned with present HIV information needs, 11 reported 
general alignment but noted minor deficiencies. Four countries acknowledged that although their objectives are 
broadly aligned, they face significant gaps or major shortcomings that require targeted improvement. 

Eighteen countries have surveillance protocols available, but only 13 are up to date. This highlights the need for 
EU/EEA countries to align their efforts in evaluating and updating the objectives and reporting protocols of their 
HIV surveillance systems —or to develop them where they do not yet exist. Objectives of a surveillance system 
should be precisely defined, tailored to the surveillance outcomes, intended information uses, and the system's 
levels (local, regional, national). Processes and components must align with these objectives to ensure valid 
information, operational efficiency, and adherence to legal mandates [7].  

In terms of governance, only 11 out of 25 EU/EEA countries currently have a surveillance steering committee in 
place—a figure that is suboptimal given the importance of cross-sectoral coordination in responding effectively to 
the HIV epidemic. A well-functioning steering committee, with active participation from key stakeholders across 
public health, clinical, academic, and community sectors, is essential to ensure the system remains relevant and 
responsive to epidemiological trends. For surveillance systems to have maximum impact, it is crucial that the data 
collected are meaningfully used, and that the steering committee perceives the system as valuable [8]. Engaging 
both the committee and broader stakeholders throughout the surveillance cycle enhances the system’s utility. Their 
involvement supports data interpretation and facilitates timely responses to emerging information. 

The assessment of tools and technical resources for HIV surveillance among EU/EEA countries reveals several key 
findings. Case notification forms are in place in 21 out of 25 countries and direct database access for reporting is 
available in 14 countries. A centralised database is used by most of the 25 countries. However, when it comes to 
linking laboratory data with epidemiological data, the situation varies between countries. Secure electronic data 
transfer systems for transferring laboratory data to the national surveillance system are in place in eight out of 18 
countries with laboratory data. Structured data management processes, including data validation and secure 
storage within databases are established in 23 out of 25 countries. Only 12 out of 25 countries can link to other 
sources of information based on personal identifiers used to report HIV cases. These findings highlight the varying 
levels of tools and technical resources across the region, with notable strengths in the use of centralised databases 
and structured data management processes. However, there are areas for improvement, particularly in secure 
electronic data transfer systems, and interoperability to retrieve data from other information sources. Additionally, 
enhancing the simplicity of the systems and incorporating more advanced and future-proof technological solutions 
could significantly increase the acceptability, timeliness and completeness of surveillance data [9]. 

The acceptability of HIV case reporting among EU/EEA countries faces several barriers for both clinicians and 
laboratories. Out of 25 countries, time constraints are reported as a significant barrier in 19 countries for clinicians 
and five countries for laboratory staff. Additionally, some countries cite inadequate reporting infrastructure, 
complexity of reporting processes, lack of training, and fear and stigma as obstacles. These barriers highlight the 
challenges faced in effectively reporting HIV cases, indicating a need for improved infrastructure, simplified 
processes, and enhanced training. 

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Although it was not possible to measure the usefulness of the HIV surveillance system directly due to the survey 
not being distributed to information users, we included proxy measures by asking about the collection of key 
information relevant to the current HIV context. Most countries (22 out of 25) can identify and link AIDS cases 
occurring after HIV infection. Additionally, 18 out of 25 countries can identify previous positive cases. In terms of 
mortality reporting, 21 out of 25 countries can report the date of death among cases, while 14 out of 25 can report 
the cause of death. AIDS cases, AIDS defining illnesses, previous positive diagnoses, and deaths are crucial for 
understanding the current epidemiological profile of HIV in the EU/EEA countries. Therefore, HIV surveillance 
systems should be adaptable to current challenges by making it easy to include or exclude information and 
adaptable to new health technologies. This flexibility will help maintain the relevance and effectiveness of the 
surveillance systems in addressing the evolving HIV landscape.  

On a positive note, most EU/EEA HIV surveillance systems can identify key populations relevant for HIV prevention. 
They capture data on men who have sex with men, people who inject drugs in all 25 countries, migrants in 24 out 
of 25 countries, transgender people in 14 out of 25 countries, sex workers in 18 out of 25 countries, and people 
who have been in prison in nine out of 25 countries. This capability ensures that the surveillance systems can 
effectively inform interventions for these key populations. 

The geographical coverage of HIV surveillance systems in EU/EEA countries is high, with 24 out of 25 countries 
reporting 100% geographical coverage. However, there are concerns about underreporting, with a median rate of 
26.5% for clinicians and 13.3% in general. Only seven out of 25 countries have implemented methods to estimate 
the extent of underreporting, indicating a gap in accurately assessing the full scope of HIV cases. This underscores 
a critical priority for current HIV surveillance systems: addressing the representativity of collected data.   

The timeliness of HIV case reporting in EU/EEA countries shows some areas for improvement. Out of 25 countries, 
13 have guidelines specifying the maximum timeframe to notify HIV cases. Among those with guidelines, only 10 
have standards for the maximum transmission time of results. The average notification time from diagnosis to 
reporting to the national system across the EU/EEA was 137 days at the time of the questionnaire, with a wide 
range from 0 to 180 days. This variability indicates significant differences in reporting times from clinicians to 
national services. These differences are linked to the characteristics of the data collection systems (electronic vs. 
paper-based) and the methods of data retrieval from laboratory databases or clinical records. Despite these 
disparities, timeliness was not judged by most countries to be a significant issue for their HIV surveillance systems. 
However, addressing these discrepancies and establishing agreed-upon timelines could further enhance the 
efficiency of the surveillance systems.  

The communication methods for HIV surveillance results among EU/EEA countries demonstrate a robust system of 
regular reporting. A total of 22 countries consistently publish surveillance reports. Most countries employ a variety 
of channels for communication, including epidemiological bulletins, scientific articles, and websites. Additionally, 
some countries utilise dashboards and social media to disseminate surveillance information. These diverse methods 
show that surveillance results are effectively communicated to various stakeholders, enhancing the overall 
transparency and responsiveness of the HIV surveillance systems. 

The assessment of the evaluation processes for HIV surveillance systems in the EU/EEA revealed that seven 
countries have conducted internal evaluations to assess their systems. Additionally, five countries have either 
conducted or are in the process of conducting external evaluations. These evaluations are crucial for ensuring the 
effectiveness and efficiency of surveillance systems, identifying areas for improvement, and maintaining high 
standards in monitoring and managing HIV cases. However, evaluations have only been performed in a few 
countries, and some were conducted several years ago. Therefore, both internal and external evaluations should 
be systematically included as part of the HIV surveillance process to guarantee that the systems are well-
maintained and address performance issues. This represents an important area for improvement, and countries 
should assess how to effectively incorporate and execute these evaluation processes to ensure the continuous 
enhancement of their HIV surveillance systems. 

Limitations  

There are several limitations to the approach taken in this survey, which should be considered when interpreting its 
results and recommendations. HIV surveillance systems are complex, and this questionnaire may lead to the 
simplification of the issues or recommendations in some areas. The survey relied on the self-assessment of a single 
person or the working group responsible for the HIV system in each country, without broader engagement with 
national or regional stakeholders from EU/EEA countries. This may have introduced bias in some responses. 
Additionally, questions could have been interpreted or understood differently, potentially leading to errors in the 
comparisons presented in this analysis. The systems and the epidemiology of HIV differ substantially across the 
EU/EEA, making direct benchmarking challenging in some areas.  

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Conclusion  

This survey highlights the heterogeneity of HIV surveillance systems across EU/EEA countries and underscores 
some of the challenges they face in collecting HIV data. While the structure and capacity of these systems vary, 
countries share common obstacles as well as opportunities for improvement. A number of priority areas for 
improvement have been identified. Some national surveillance systems operate with outdated objectives and 
protocols, limiting their relevance to the current epidemiological situation. This misalignment hampers the ability of 
public health authorities to respond effectively to evolving HIV trends. Furthermore, the absence of a clearly 
defined governance structure or dedicated surveillance steering committee in some countries limits effective 
coordination and decision-making. Technical and data management challenges also were found. These include 
challenges like lack of system interoperability, weak integration between laboratory and epidemiological data, and a 
lack of secure, standardised mechanisms for electronic data transfer. In addition, reporting barriers — such as time 
constraints, inadequate infrastructure, insufficient training for clinicians and laboratories, stigma, and complex 
procedures — may contribute to widespread underreporting. Few countries have adopted standardised 
methodologies to measure or address underreporting, further affecting the accuracy and completeness of 
surveillance data. 

Other commonly reported challenges faced by surveillance systems include the inability to capture important 
information such as death records, dates of AIDS diagnosis following HIV diagnosis, and previously known HIV-
positive cases. Additionally, the absence of regular internal and external evaluations in several countries limits 
opportunities for quality assurance, learning, and system improvement. To address these issues, it is essential to 
update surveillance objectives, enhance governance frameworks, secure adequate human and financial resources, 
and invest in modern digital infrastructure. Strengthening data integration, simplifying reporting processes, and 
improving communication with healthcare providers and other stakeholders will help improve both the efficiency 
and representativeness of surveillance. 

In recognition of these needs, ECDC, under the framework of the Serious Cross-Border Threats to Health 
legislation, will initiate a review of current HIV surveillance objectives. In collaboration with the HIV Surveillance 
Network, ECDC will work to define updated surveillance standards in the coming years. This coordinated effort 
aims to ensure that HIV surveillance systems across the EU/EEA are better aligned with public health priorities, 
responsive to emerging trends, and equipped to support effective monitoring, prevention, and control measures. 
By adopting a more coordinated, adaptive, and forward-looking approach, EU/EEA countries can significantly 
enhance the capacity and resilience of their HIV surveillance systems—supporting progress toward national and 
global HIV response targets. 

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References 

1. 

2. 

3. 

4. 

5. 

6. 

7. 

8. 

9. 

WHO Regional Office for Europe (WHO EURO). Regional action plans for ending AIDS and the epidemics of viral hepatitis 
and sexually transmitted infections 2022–2030. Copenhagen: World Health Organization; 2023 

WHO Regional Office for Europe  (WHO-EURO), European Centre for Disease Prevention and Control (ECDC). HIV/AIDS 
for  Europe;  2024. 
surveillance 
https://www.ecdc.europa.eu/sites/default/files/documents/HIV_Surveillance_Report_2024.pdf  

in  Europe  2024  –  2023  data.  Copenhagen:  WHO  Regional  Office 

European  Union.  Regulation  (EU)  2022/2371  of  the  European  Parliament  and  of  the  Council  of  23  November  2022  on 
serious cross-border threats to health and repealing Decision No 1082/2013/EU. Official Journal of the European Union. 
2022 Dec 6;L314:26–61. 

Hendrikx  P  GE,  Chazel  M,  Moutou  F,  Danan  C,  Richomme  C,  Boue  F,  Souillard  R,  Gauchard  F,  Dufour  B.  OASIS:  an 
assessment  tool  of  epidemiological  surveillance  systems  in  animal  health  and  food  safety.  Epidemiology  &  Infection. 
2011;139(10):1486-96.  

United Nations. Sustainable Development Goal 3: Ensure healthy lives and promote well-being for all at all ages [Internet]. 
New York: United Nations; [cited 2025 Apr 2]. Available from: https://sdgs.un.org/goals/goal3#targets_and_indicators. 

World Health Organization (WHO). Implementing the global health sector strategies on HIV, viral hepatitis and sexually 
transmitted infections, 2022–2030: report on progress and gaps 2024 [Internet]. Geneva: World Health Organization; 2024 
[cited 2025 Apr 2]. Available from: https://iris.who.int/bitstream/handle/10665/376814/9789240094925-eng.pdf 

Groseclose SL, Buckeridge DL. Public health surveillance systems: recent advances in their use and evaluation. Annu Rev 
Public Health. 2017;38:57–79. 

Jia P, Liu S, Yang S. Innovations in public health surveillance for emerging infections. Annu Rev Public Health. 2023;44:55–
74. 

Birkhead GS, Klompas M, Shah NR. Uses of electronic health records for public health surveillance to advance public health. 
Annual review of public health. 2015 Mar 18;36(1):345-59. 

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Annex 2. Extra tables from the HIV 
surveillance system mapping  

Annex Table 1. EU/EEA country survey of HIV surveillance systems: data management procedures 
implemented to handle HIV surveillance data by country, 2024 

Data management procedures implemented to handle HIV surveillance data  
We use study cohort data. A study-cohort internal management process is in place. 
Deduplication, generation of queries data providers in case of data quality issues.  
In Croatia, there is a centralised system of treatment of people with HIV infection and AIDS (in one clinical hospital in the capital city) and the 
report/notification of HIV/AIDS disease is submitted by the institution that provides treatment services by directly entering the data in an 
electronic online database - separate domain of the National Information System - in the national HIV/AIDS registry. The Internet interface for 
data entry is an online application within the National Information System (NAJS). The security of the system depends not only on the 
technical settings, the technologies used and the access administration, but also on the daily business processes that must be harmonised 
with the needs of standards for preserving the privacy of subjects whose data is recorded. The domains within NAJS are integrated with 
each other in such a way that they maintain defined procedures of employees who have the authority to work on parts of the system, and 
only persons who are authorised to work in that system have access (access with username and password). Entry to the database is 
secured according to modern IT security standards and additional security (SSL protocol, double authentication for user verification to work 
in the application, search or access to personal data requires additional authentication, anonymized data export with limited access). All 
employees who work on data entry, validation and analysis are educated about the obligation to protect personal data. 

We store data from the surveillance system in a database based in the SSI, within the Ministry of Health. 
The data is stored in the Estonian Communicable Diseases Register. The data is overseen and corrected by its administrator. The 
possibilities of the registry are limited, the data are therefore downloaded and managed in Excel files. 

The majority of data (95%) are sent via the online declaration system. The remaining 5% arrive on paper forms and are entered at the 
national level. Repeat declarations are identified based on an identical anonymisation code. The system also identified individuals with codes 
referring to near-identical personal information, which the technicians then compare manually. The technicians classify declarations into 
patient folders based on their IDs. If data is missing or incoherent, a request is sent to the declaring physician/laboratorian. If only one form 
received (physician or laboratorian), a reminder is sent to the other potential declarant. Every quarter, a raw data file is produced from the 
database exports, at which point additional automated checks are done for errors and these are corrected if possible. 
Matching algorithm; de-duplication; plausibility check. 

Data are collected via Computerised Infectious Disease Reporting System (CIDR.) 
Check of double reporting, correct errors, variables inconsistency or discrepancy, missing data. 
Data are managed in the Swiss Data management System for Infectious Diseases and validated there. In addition, there is also a data 
management procedure done by preparing and uploading the HIV data to TESSy. HIV and AIDS data are stored on a secure drive internally 
(it meets the data protection criteria) in the Office of Public Health. 
A centralised system—the National Communicable Diseases and Pathogens Information System (ULSVIS)—collects, processes, analyses, 
and stores data on communicable disease cases, pathogens, and other epidemiologically relevant information. This system supports the 
early detection of infectious diseases and outbreaks, facilitates timely and appropriate responses, and strengthens the overall management 
of public health threats. HIV case data are managed within a dedicated module of the system. A portion of these data is automatically 
transferred from the Electronic Health Services and Cooperation Infrastructure Information System (ESPBI IS), while the remainder is 
submitted in paper format and entered manually via an online interface. System security is maintained through a combination of technical 
safeguards, applied technologies, and access controls, along with daily operational procedures aligned with personal data protection and 
privacy regulations. By 2028, full automation of all processes and data reporting—eliminating paper submissions—is planned. 
Data are sent by labs via xml/HDA7 to Agence e-sante who makes an integrity check and transfers date to our data base, which can only be 
accessed via double authentication. Clinical data are collected and stored within the hospital. Data are validated by the national authority. 

Protocolised data collection with validation during and after data entry. 

Positive results are reported electronically from the laboratories and form the basis for new cases in the surveillance system. Identity and 
information on personal data is retrieved and quality assured from the central population registry. Epidemiological information is reported by 
the clinician and information is combined with the laboratory information in a common database. 
All HIV cases diagnosed by clinicians and/or laboratories are reported to the local sanitary stations. Data are filled by clinicians/laboratory 
and send on paper forms to sanitary inspections, after this they are reported to central database - by electronic system.  After first verification 
all data are sent by electronic system to the central database. Access to this database is after authorisation only for authorized employees of 
NIPH NIH-NRI. Secondly, after the next data verification and control process, anonymous data are analysed, and assessment of 
epidemiological situation is presented to public information.  In 2025 we planning introduce electronical reports only. 
Data collection: Electronic web-based reporting system (Clinicians and Laboratories); Validation by Public Health officer/Health Authority; 
Database Validation and registration. Secure storage – Ministry of Health servers. 
Based on the Technical Norms of the National Health Programmes (uploaded in the first page). 

Country  
Austria 
Belgium 

Croatia 

Cyprus 
Czechia 

Denmark 

Estonia 

Finland 

France 

Germany 
Greece 

Ireland 
Italy 

Liechtenstein 

Lithuania 

Luxembourg 

Malta 
Netherlands 

Norway 

Poland 

Portugal 

Romania 
Slovenia 

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Country  

Data management procedures implemented to handle HIV surveillance data  

Spain 

Sweden 

Once a year, regional surveillance departments send databases of new HIV diagnoses and AIDS cases separately, to the national level 
through a secure exchange channel. At the national level, data quality control is performed, and the regional databases are aggregated to 
create the national databases. 
Secured database system with incorporated data validation. 

CIDR: Computerised Infectious Disease Reporting System; xml/HDA7: extensible Markup Language /Health data A7;; NAJS: 
Nacionalni Automatizirani Jedinstveni Sustav from Croatia (English: National Automated Integrated System); NIPH-NIH-NRI: 
National Institute of Public Health – National Institute of Hygiene – National Research Institute; SSI: Statens Serum Institut 
(English: State Serum Institute); TESSy: The European Surveillance System. 

Annex Table 2. EU/EEA country survey of HIV surveillance systems: unique identifiers utilised across 
HIV surveillance systems and reporting laboratories in each country, 2024 

Country 

Austria 

Belgium 

Croatia 

Cyprus 

Czechia 

Denmark 

Estonia 

Finland 

France 

Germany 

Greece 

Ireland 

Italy 

Surveillance systems 

Laboratories 

In cohort study: social health insurance number 

Pseudonymised national register number 

Personal identification number (OIB) 

N/A 

ID number, name 

CPR number 

Personal identification code 

Social security number 

National Registry Number (pseudonymised before 
sending to the national surveillance) 

ID number 

CPR (national identification number) 

Personal identification code 

Social security number 

A pseudonymized ID that has been used since the beginning of the surveillance system 
based on patient information; is generated at the point of declaration 

Pseudonymous ID generated based on patient 
information 

Alphanumeric HIV code; will be changed within this year to electronic system and 
electronic ID 

Alphanumeric code of name 

Names are not available to surveillance staff at national surveillance level, DOB, Specimen 
ID 

Identification anonymous code 

Names are not available to surveillance staff at 
national surveillance level, DOB, Specimen 
Number, Clinic ID 

They currently use Lab-IDs and an encrypted 
personal information. 

Social security number 

GU number, ID Number 

National identity numbers 

Liechtenstein 

Date of diagnosis 

Lithuania 

ID-number, date of diagnosis and free text 

Luxembourg 

Social security number 

Malta 

GU number, ID number 

Netherlands 

Patient number/surveillance code 

Norway 

National identity number 

Poland 

Portugal 

Romania 

Slovenia 

Spain 

Sweden 

DoB, name/surname/ initials and gender are considered sufficient for duplicates 
identification. Legally reports without identifier are allowed (gender, year of birth, residence 
are required) 

Name, surname, DOB, insurance number 

National Health Service user number. This is related to the database itself where we store 
the data. Both clinical notification and lab notification are made with the UID  

National Health Service user number 

Report between the data released by the clinicians and laboratories and the surveillance 
system 

Code/name 

Depends on regional system 

ID-number, date of diagnosis and free text 

Personal identity number or reserve number (only 
physicians and lab know the complete ID number) 

CPR: Det Centrale Personregister (English: The Central Person Register); DOB: Date of Birth; GU: Genitourinary number; ID: 
Identification number; OIB:  Osobni identifikacijski broj (English: Personal Identification Number); UID; Número de Utente do 
SNS (User Number for the National Health Service). 

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Annex Table 3. EU/EEA country survey of HIV surveillance systems: measures used to address 
missing data among reported cases by country, 2024  

Measures used to address missing data among reported cases  

We use the ECDC tool for the HIV estimates 

Multiple imputation 

There is centralised system of treatment of people with HIV infection and AIDS (in one clinical hospital in the capital city) and the 
report/notification of HIV/AIDS disease is submitted by that institution that provides treatment services by directly entering the data in an 
electronic online database - separate domain of the National Information System - in the national HIV/AIDS registry. Therefore, all 
questions and problems related to correcting or supplementing data are carried out in direct communication and cooperation with 
employees who carry out data entry. 

N/A 

Modelling 

Sometimes clinicians are contacted. 

Automatic reminders from the registry, training sessions 

If essential, queries back to declarant; reminders to clinician (if only laboratory form received) or laboratorian (if only clinician form 
received); multiple imputation 

Supplementary information is used from secondary data sources, pharmacy prescription data, health insurance 

Follow up of inconsistencies on enhanced forms with clinicians/laboratories 

Reaching regional contacts to fill the gaps 

We contact the doctors for supplementary information. 

Clinicians are reminded to report for cases missing epidemiological information. 

An information request is sent to reporting clinicians when data is missing 

Additional information request  

None 

Country  

Austria 

Belgium 

Croatia 

Cyprus 

Czechia 

Denmark 

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36 

 
 
 
 
 
 
 
 
European Centre forDisease 
Prevention and Control (ECDC)

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Tel. +46 858 60 10 00
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www.ecdc.europa.eu