InsightRP2: a Global Patient Registry for RP2-associated Retinitis Pigmentosa
Conditions: RP2-associated Retinitis Pigmentosa, X-Linked Retinitis Pigmentosa (XLRP), Retinitis Pigmentosa 2
Sponsor: University of Göttingen

 
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Study Protocol “InsightRP2 Patient Registry” 
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Study protocol version 1.2, 24.10.2024 
“InsightRP2: a global patient registry for RP2-associated retinitis pigmentosa” 
 
Study leaders: 
Prof. Dr. med. Bernd Wollnik, Institute of Human Genetics 
Dr. med. Nina Bögershausen, Institute of Human Genetics 
 
Study coordinator: 
Dr. med. Nina Bögershausen 
University Medical Center Göttingen, Institute of Human Genetics 
Heinrich-Düker-Weg 12, 37073 Göttingen 
Tel.: 0551-39-69016 
E-mail: nina.boegershausen@med.uni-goettingen.de 
 
Team members involved in the study: 
Scientists and physicians from the Institute of Human Genetics 
Lukas Cyganek, Center for Cardiovascular disease, stem cell unit 
 
Study type: Register study, monocentric 
 
Date and version of the study protocol: 24.10.2024, version 1.2    
 
                                        
                                
 
Signature study leaders:     Prof. Dr. med. Bernd Wollnik       Dr. med. Nina Bögershausen                    
 
Written consent of the department leader: 
I consent to the conduct of the study at our institute. 
 
 
Göttingen, 24.10.2024                         
      
City, date 
 
 
 
   Prof. Dr. med. Bernd Wollnik 
Institute for Human Genetics 
Director: Prof. Dr. med. Bernd Wollnik 
Heinrich-Düker-Weg 12, 37073 Göttingen 
 
Study leaders 
Prof. Dr. med. Bernd Wollnik 
Dr. med Nina Bögershausen 
 
Study coordinator 
Dr. med Nina Bögershausen 
Tel. 0551 / 39-69016 
Email: nina.boegershausen@med.uni-
goettingen.de 
 
Datum 
24.10.2024      

 
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Summary 
Retinitis pigmentosa (RP) is a group of inherited retinal disorders characterized by progressive 
peripheral vision loss and night blindness, leading to central vision loss and eventual blindness. 
Among the various genetic mutations associated with RP, mutations in the RP2 gene are responsible 
for a significant subset of X-linked retinitis pigmentosa (XLRP), an especially severe form of the 
disease. 
There is currently no specific patient registry for RP2-associated retinitis pigmentosa. Due to the 
rarity of the disease, only a few patients with this disease are seen at various care sites, making 
clinical care and diagnosis very challenging. In addition, there are numerous knowledge gaps 
regarding the course of the disease, the disease mechanisms and therapeutic approaches, which 
poses additional challenges for patient care. Understanding and future treatment of RP2-associated 
RP is crucial due to its early onset and rapid progression. There is an urgent need for targeted 
research to develop effective therapies. 
At the Institute of Human Genetics, we have set ourselves the goal of investigating the disease 
mechanisms of RP2-associated RP and contributing to the long-term development of a therapy for 
this rare disease. For this purpose, we would like to set up a patient registry specifically for RP2-
associated RP, which is outlined in this protocol. The registry will use a secure REDCap-based 
database hosted by the Working Group for Biometrics, Data Management and Informatics in Clinical 
Trials at the University Medical Center Göttingen. The medical data collected will enable us to 
conduct studies on the natural history, mutation distribution and possible genotype-phenotype 
correlations of this disease. In addition, the collection of medical image data should enable 
evaluation for the purpose of improving diagnostic processes. Last but not least, we aim to form a 
patient collective who can be offered participation in possible therapy studies at a later date. The 
InsightRP2 registry therefore aims to support basic, preclinical and clinical research for this early-
onset, rare disease and to improve long-term clinical care and the quality of life of those affected. 
 
 
 
 
 
 
 

 
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Zusammenfassung  
Retinitis pigmentosa (RP) ist eine Gruppe erblicher Netzhauterkrankungen, die durch 
fortschreitenden zunächst peripheren, und später auch zentralen, Sehverlust und Nachtblindheit 
gekennzeichnet ist. In den meisten Fällen führt die Erkrankung schließlich zur Erblindung. 
Mutationen im RP2-Gen sind für einen erheblichen Teil der X-chromosomalen Retinitis pigmentosa 
(XLRP) verantwortlich, einer besonders schweren Form der Krankheit.  
Bisher existiert noch kein spezifisches Patient*innenregister für die RP2-assoziierte Retinitis 
pigmentosa. Aufgrund der Seltenheit der Erkrankung werden nur vereinzelte Patienten mit dieser 
Erkrankung an verschiedenen Versorgungsstandpunkten gesehen, sodass die klinische Versorgung 
und die Diagnosestellung sehr herausfordernd sind. Darüber hinaus bestehen zahlreiche 
Wissenslücken in Bezug auf den Krankheitsverlauf, die Krankheitsmechanismen und über 
therapeutische Ansätze, was die Patientenversorgung zusätzlich vor erhebliche Herausforderungen 
stellt. Das Verständnis und die zukünftige Behandlung der RP2-assoziierten RP sind aufgrund des 
frühen Beginns und des rapiden Verlaufs von entscheidender Bedeutung. Es besteht ein dringender 
Bedarf an gezielter Forschung, um wirksame Therapien zu entwickeln. 
Am Institut für Humangenetik haben wir es uns zum Ziel gesetzt, die Krankheitsmechanismen der 
RP2-assoziierten RP zu erforschen und langfristig zur Entwicklung einer Therapie dieser seltenen 
Erkrankung beizutragen. Zu diesem Zweck möchten wir ein Patient*innenregister speziell für die 
RP2-assoziierte RP aufbauen. Das Register wird eine sichere REDCap-basierte Datenbank nutzen, 
die von der Arbeitsgruppe für Biometrie, Datenmanagement und Informatik in klinischen Studien der 
Universitätsmedizin Göttingen gehostet wird. Die erhobenen medizinischen Daten sollen uns 
ermöglichen, Studien zum natürlichen Krankheitsverlauf, der Mutationsverteilung und möglichen 
Genotyp-Phänotyp-Korrelationen durchzuführen. Darüberhinaus soll durch die Erhebung von 
medizinischen Bilddaten eine Auswertung zum Zweck der Verbesserung diagnostischer Prozesse 
ermöglicht werden. Nicht zuletzt wollen wir ein Patientenkollektiv bilden, welchem zu einem späteren 
Zeitpunkt die Teilnahme an möglichen Therapiestudien angeboten werden kann. Das InsightRP2 
Register verfolgt somit das Ziel, die Grundlagen-, präklinische und klinische Forschung für diese 
frühmanifestierende, seltene Erkrankung zu unterstützen und langfristig, die klinische Versorgung 
und die Lebensqualität der Betroffenen zu verbessern. 
 
 

 
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Table of Contents 
1. 
Introduction .............................................................................................................................. 5 
2. 
Study Aims .............................................................................................................................. 7 
3. 
Study Design ........................................................................................................................... 7 
3.1. 
Patient count ..................................................................................................................... 7 
4. 
Study Execution ....................................................................................................................... 7 
4.1. 
Recruitment ...................................................................................................................... 7 
4.2. 
Inclusion and exclusion criteria ......................................................................................... 8 
4.3. 
Planned study procedure .................................................................................................. 9 
4.4. 
Possible risks for the study participants .......................................................................... 10 
4.5. 
Discontinuation criteria .................................................................................................... 10 
4.6. 
Time and costs ............................................................................................................... 10 
5. 
Legal and ethical aspects....................................................................................................... 10 
6. 
Relevance of the study results to the study participants ......................................................... 13 
 
 

 
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1. Introduction 
Retinitis pigmentosa (RP) represents a diverse group of inherited retinal dystrophies (IRD) 
characterized by progressive photoreceptor degeneration leading to visual impairment and eventual 
blindness. Affecting approximately 1 in 4,000 individuals worldwide, RP exhibits significant genetic 
heterogeneity, with mutations identified in over 100 different genes (Hartong et al. 2006). Among 
these, mutations in the RP2 gene account for approximately 20% of X-linked retinitis pigmentosa 
(XLRP), a particularly severe and early-onset form of the disease (Georgiou et al. 2023; Cheloni et 
al. 2022; Fahim et al. 1993).  
In Germany, roughly four million people are living with one of approximately 8,000 rare diseases, 
including roughly two million children and adolescents (National Action League for People with Rare 
Diseases (NAMSE): National Plan of Action for People with Rare Diseases, 2013). Rare diseases 
present a remarkable challenge by affecting a relatively small number of individuals who are broadly 
distributed across Germany and the world. Retinitis pigmentosa collectively qualifies as a rare 
disorder, which, by definition, affects less than 5 in 10,000 people (Regulation (EG) No. 141/2000 of 
the European Parliament and Council, Preamble Para. 5, 1999). However, RP2-associated RP is 
even rarer and thus, only few patients are seen at individual ophthalmological and human genetics 
facilities (personal communication). This aspect hinders participation in rare disease studies and 
access to evolving treatment modalities that are reasonably projected to go beyond currently used 
devices (glasses or special visual aids) to include gene therapies for visual impairment (Birch et al. 
2023). However, since RP2-associated RP accounts only for a minor fraction of XLRP as compared 
to RPGR-associated RP, current therapeutic efforts have focused on the latter, which is the more 
prevalent disease. Small patient numbers may be the main reason hindering efforts to finding a cure, 
in spite of promising pre-clinical study results (Mookherjee et al. 2015; Lane et al. 2020). We aim to 
help end this inequity by creating a collaborative patient registry, linking patients from Germany and 
around the world with physicians and researchers trying to better understand and eventually treat 
this rare condition. 
Patient registries serve as a mechanism to engage patients who may otherwise face hurdles in 
connecting with rare disease studies. Registries support research into pathogenesis, therapy, and 
longitudinal natural history studies and can serve as a tool to recruit participants into clinical trials. 
Unlike the situation in countries such as France with the National Database of Rare Disease 
(BNDMR), a national coordinated registry, Germany currently lacks a central coordinated registration 
of patients with rare diseases and it appears there are neither plans for forming, maintaining nor 
financing registries for these purposes. The Council of the European Union has recommended that 
each member country prepare its own respective national plan and establish national centers for 

 
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research and treatment (National Action League for People with Rare Diseases (NAMSE): National 
Plan of Action for People with Rare Diseases, 2013). It is therefore the duty of the expert center itself 
to form such registries. The establishment of centers for individuals with rare diseases and the 
inclusion of research activities are of central importance to strengthening research on rare diseases 
in Germany.  
The only German patient register for IRD, hosted by the German patient organization ProRetina 
(https://www.pro-retina.de/forschung/patientenregister) registers patients with retinal disease, 
irrespective of the genetic cause, which is tremendously important work for the IRD community. In 
contrast to ProRetina, this study aims to develop a REDCap-based registry specifically for individuals 
with an established diagnosis of RP2-associated RP. The “InsightRP2” registry is tailored to 
document the clinical and genetic diagnostic data that are specific to RP2-associated RP, thus 
enabling more focused clinical and basic as well as pre-clinical research. We believe our registry will 
work to address many unmet needs for RP2 patients while complementing the extensive efforts and 
expertise at the Göttingen Campus. The key stakeholders of our registry are the patients, their 
physicians, and research teams with long-established expertise. 
 
Literature  
 
Birch, David G.; Cheetham, Janet K.; Daiger, Stephen P.; Hoyng, Carel; Kay, Christine; 
MacDonald, Ian M. et al. (2023): Overcoming the Challenges to Clinical Development of X-Linked 
Retinitis Pigmentosa Therapies: Proceedings of an Expert Panel. In: Translational vision science & 
technology 12 (6), S. 5. DOI: 10.1167/tvst.12.6.5. 
Cheloni, Riccardo; Jackson, Daniel; Moosajee, Mariya (2022): A Natural History Study of RP2-
Related Retinopathy. In: Journal of clinical medicine 11 (23). DOI: 10.3390/jcm11236877. 
Fahim, Abigail T.; Daiger, Stephen P.; Weleber, Richard G. (1993): GeneReviews®. Nonsyndromic 
Retinitis Pigmentosa Overview. Hg. v. Margaret P. Adam, Jerry Feldman, Ghayda M. Mirzaa, 
Roberta A. Pagon, Stephanie E. Wallace, Lora J. H. Bean, et al. Seattle (WA). 
Georgiou, Michalis; Robson, Anthony G.; Jovanovic, Katarina; Guimarães, Thales A. C. de; Ali, 
Naser; Pontikos, Nikolas et al. (2023): RP2-Associated X-linked Retinopathy: Clinical Findings, 
Molecular Genetics, and Natural History. In: Ophthalmology 130 (4), S. 413–422. DOI: 
10.1016/j.ophtha.2022.11.015. 
Hartong, Dyonne T.; Berson, Eliot L.; Dryja, Thaddeus P. (2006): Retinitis pigmentosa. In: Lancet 
(London, England) 368 (9549), S. 1795–1809. DOI: 10.1016/S0140-6736(06)69740-7. 
Lane, Amelia; Jovanovic, Katarina; Shortall, Ciara; Ottaviani, Daniele; Panes, Anna Brugulat; 
Schwarz, Nele et al. (2020): Modeling and Rescue of RP2 Retinitis Pigmentosa Using iPSC-
Derived Retinal Organoids. In: Stem cell reports 15 (1), S. 67–79. DOI: 
10.1016/j.stemcr.2020.05.007. 
Mookherjee, Suddhasil; Hiriyanna, Suja; Kaneshiro, Kayleigh; Li, Linjing; Li, Yichao; Li, Wei et al. 
(2015): Long-term rescue of cone photoreceptor degeneration in retinitis pigmentosa 2 (RP2)-

 
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knockout mice by gene replacement therapy. In: Human molecular genetics 24 (22), S. 6446–
6458. DOI: 10.1093/hmg/ddv354. 
National Action League for People with Rare Diseases (NAMSE): National Plan of Action for People 
with Rare Diseases, 2013. NAMSE Coordinating Office. 
Regulation (EG) No. 141/2000 of the European Parliament and Council, Preamble Para. 5, 1999 
 
2. Study Aims 
The study goal is to establish a patient registry, in both German and English languages, for patients 
with hereditary retinal disease due to variants in RP2. We wish to engage patients by guiding them 
to our center for coordinated longitudinal natural history studies, opening possibilities of functional 
studies of RP2 variants, and to provide consent to be informed about possible longer-term future 
studies that match our expertise profile, following respective (forthcoming) study approvals.  
Main objective criterion: 
To create a collaborative registry for patients with a molecular genetic diagnosis of RP2-associated 
RP to increase understanding of natural history and types of genetic variants in patients from 
Germany and around the world and to facilitate clinical and basic research on RP2-associated RP. 
Secondary objective criterion: 
Knowledge of RP2 variants with possible permitted contacts to patients may lead to improved access 
to therapies and knowledge that will better characterize this patient group in the long term and create 
prerequisites for improved, patient-tailored therapy and care. 
 
3. Study Design 
3.1. Patient count 
We intend to include approximately 200 patients in the study. There is no major limitation to 
participant numbers through the REDCap-based database tool. 
 
4. Study Implementation 
4.1. Recruitment 
The registry will be stored as a secure online database, making it potentially accessible to a broad 
participant base. Participants will include parents/guardians of minors and adult patients from 
multiple potential sources. Potential participants of this study can be offered a specialized 
consultation led by Dr. Nina Bögershausen at the Institute of Human Genetics and Center for Rare 

 
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Diseases Göttingen, either in person or via video call (using e.g. “Sprechstunde online” as platform 
tool). Furthermore, we anticipate recruiting participants who were diagnosed through other molecular 
genetic diagnostic laboratories in Germany and around the world. Access to the study information 
and consent forms will be linked on the Institute of Human Genetics and Department of 
Ophthalmology webpages at UMG, as well as a central “registry of registries” such as the European 
Rare 
Disease 
Registry 
Infrastructure 
Directory 
of 
Registries 
(https://eu-rd-
platform.jrc.ec.europa.eu/erdri-description_de) 
and 
the 
Orphanet 
portal 
(https://www.orpha.net/consor4.01/www/cgi-bin/ResearchTrials_RegistriesMaterials.php?lng=EN) 
to provide visibility to participants. Visibility to the intended national/international audience will occur 
via four possible modalities: (1) through registration of the registry in multiple rare disease registries 
(such as those listed above), (2) through placement on a variety of UMG websites (such as those 
mentioned above), (3) through contacting the ProRetina patient organization and (4) through 
potential contacts via social media (e.g. Facebook: Retinitis Pigmentosa patient groups). We 
anticipate that these procedures will offer broad dissemination of this registry on national and 
international scales and, if successful, it will solely be due to the motivation and engagement of 
families who seek more information. 
Only patients who have completed the consent procedure with a signature will be allowed to access 
the registry questionnaire, which is stored separately from personal data. Consent will be obtained 
again for underage subjects when they reach the age of majority. No fees or honorariums will be 
paid. 
 
4.2. Inclusion and exclusion criteria 
Inclusion criteria: 
A molecular genetic diagnosis involving a heterozygous or hemizygous variant in RP2 and a written 
informed consent to participate are required for access to the registry questionnaire. The RP2 
variants and clinical data will be re-reviewed by the study leaders mentioned on the first page of the 
Patient Information document (Prof. Bernd Wollnik and Dr. Nina Bögershausen) and associated 
team members (scientists at the Göttingen Campus, who will only see pseudonymized data). 
Patients of all ages meeting the above criteria will be allowed to participate. As documentation will 
be in English and German, those who can navigate these pages will be included.  
 
 
 

 
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Exclusion criteria:  
Patients with evidence of non-RP2 molecular genetic diagnoses will be excluded. Collection of data 
and further analysis will not be possible without the consent of the patient or legal guardian. Patients 
who cannot navigate registry documentation in English or German will be excluded. 
 
4.3. Planned study procedure 
Interventions 
This study will collect already existing genetic and clinical data and will not require additional 
specimen sampling. Double pseudonymized medical data may be used for a review of mutational 
landscapes and natural history, double pseudonymized image data may be used for bioinformatic 
image analysis aiming to improve clinical diagnostic procedures, laboratory results may inform 
clinicians about possible biomarkers that might be investigated in future studies (Fig. 1). Thus, the 
collected data are intended to enable future studies aiming to better understand the pathophysiology 
of RP2-associated RP, to optimize clinical management, and to develop novel therapeutic strategies. 
 
Figure 1. Data collection and possible use for future studies aiming to better understand RP2-RP. 
 

 
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4.4. Possible risks for the study participants 
Since biosampling is not required, there is no health risk to the participant. This is a low-risk study. 
4.5. Discontinuation criteria 
Individual discontinuation criteria 
Consent for participation can be withdrawn at any time, without any need to provide reasoning. Study 
participants have the right not to know of any results of the study, such as results from the natural 
history or functional/experimental studies. They have the right to stop the study procedure at any 
time until the results have been published or communicated.  
Discontinuation criteria of the overall study 
The study will be discontinued prematurely if voluntary personnel no longer have the capacity to 
execute the study. 
4.6. Time and costs 
The study is planned for a maximum period of 25 years. The data will be anonymized after 25 years 
unless the participants consent to use of email address to receive continued information about 
treatment options for a longer period of time. Following this, the study leaders will no longer be able 
to match personal data with medical data and the email address will be kept separate from the 
medical data. All patient personal information with exception of participant email address will be 
deleted, if given permission to contact the patient by email, otherwise, this will also be deleted. This 
appears as a mandatory field that the patient must select either “yes” or “no” in the study consent 
form. We would like to maintain the option to contact participants via email to possibly circulate 
information in the form of potential newsletters about new therapies. The patient can opt out at any 
time. Access to REDCap software is maintained free of charge by the working group for Biometrics, 
Data Management and Informatics in Clinical Studies at the University Medical Center Göttingen. 
Personnel will be funded through various in-house and third-party sources. 
 
5. Legal and ethical aspects 
Informed consent and voluntary participation 
Study participation is voluntary. Prior to the study, patients will receive study information that has 
been written for children between 10 and 13 years of age, adolescents between 14 and 17 years of 
age and adults. Prospective participants are encouraged to direct questions to a study leader who 
volunteered to be the point of contact (Dr. Nina Bögershausen), whose email is at the top left corner 

 
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of all information sheets and, for convenience, disclosed directly in the information materials. We will 
also emphasize contact details on the institutional websites (that will be designed following ethical 
approval) to ensure this is clear to all participants. The participants will be informed about the nature 
and scope of the planned study and the manner and way their data will be used for the study. They 
will also be informed about any possible risks and benefits that may derive from the study. Consent 
will be obtained through signature via use of a computer mouse/mouse pad. Participants also have 
the right not to know about new findings that may be of relevance and/or to be re-contacted to learn 
about new therapy developments (right not to know). Consent to study participation can be 
withdrawn at any time without stating reasons and without disadvantages to further medical care. In 
case of withdrawal of consent, the collected data will be deleted. In instances when the patient is a 
minor, consent from both parents or legal guardian(s) will be required for participation. 
Handling of patient data 
Data are digitally recorded using an electronic case report form (eCRF) in the REDCap® database, 
a web-based database solution which meets all technical GCP requirements. Plausibility checks and 
checks for missing values are carried out continuously over the course of the study in order to 
promote data quality. The REDCap® instance is installed on servers of the Gesellschaft für 
wissenschaftliche Datenverarbeitung Göttingen (GWDG) and is managed according to the SOPs of 
the clinical trials unit UMG. Daily backups are created and kept for up to 90 days.  
Patient names and all other confidential information are subject to medical confidentiality and 
provisions of the General Data Protection Regulation (GDPR/DSGVO), as well as the State of 
Federal Data Protection Act (LDSG/BDSG). A detailed data security and data protection concept is 
described in Appendix 2. Briefly, the registry is divided into two separate databases to allow 
separation of patient identifying data from clinical and genetic data: the consent and patient 
information database (personal data), and the InsightRP2 registry database (medical data). This 
structure guarantees the strict separation of person identifying data and medical information. 
Registration and participation in this study will happen in a two-step process, which also includes a 
two-step pseudonymization procedure:  
1.) Registration requires the completion two online consent forms (study consent and a declaration 
of consent for data protection), both available via the REDCap-based online “Consent Forms” portal. 
Following review of the study information, the patient or legal guardian(s) will complete a patient 
information sheet, as well as the two consent forms online. The data entered at this step will 
automatically be pseudonymized with a record ID and stored in REDCap under this pseudonym. 
Only the study leaders have access to the data submitted to the consent and patient information 
database. The study leaders will be notified of the data entry by the REDCap interface. The study 

 
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leaders will then ascribe a separate case ID within the InsightRP2 registry database, which will be 
used for the processing of medical data, assuring pseudonymization of medical data. At this point, 
only the study leaders mentioned on the first page of the patient information document (Prof. Bernd 
Wollnik and Dr. Nina Bögershausen) will have access to a password secured reference list, linking 
record ID and case ID, which is stored on a secure server of the GWDG with restricted access. 
2.) For participation, the patient or legal guardian(s) will be provided a link and a case-specific log-
in via an encrypted email (Cryptshare), for completion of the registry questionnaire. The participant 
can complete the questionnaire to whatever extent desired and / or include his / her physician in this 
task by sharing the link that has been provided. Participants will also receive pdf copies of the Study 
Information, Information on the Processing of Personal Data and signed consent forms via 
Cryptshare for their personal records. In the study information and again in the relevant registry 
fields, individuals are requested to remove (e.g. by pen or marker) personal information, such as 
name or date of birth, on all uploaded documents. To ensure that all personal data have been 
properly redacted before allowing access to members of the study group, a study leader will review 
all patient data upon submission.  
All other members of the study group will have restricted access to pseudonymized data only. 
Genetic and clinical data will be shared with the study team to accelerate understanding of RP2-
associated RP for eventual publication, most likely as a natural history study, following double 
pseudonymization. Internal data sharing can include selected genetic and clinical data or analysis 
results, which, in all cases, will be pseudonymized. Selected results from this study will be used in a 
double pseudonymized form for teaching, research or presentations at scientific conferences and 
will be available in this form for a longer time. This means that the original case ID will undergo a 
second round of pseudonymization with a number generated by a random number generator and 
take the form “Individual” (or appropriate synonym) then random “number,” as is customary in human 
genetics publications (e.g. individual 10). The new list (password protected excel) is stored on a 
secured server separately from the REDCap pseudonymized list and protected from unauthorized 
access. The assignment of persons after pseudonymization and double pseudonymization can only 
be done by the study leaders and not by third parties. More details concerning data security are 
described in Appendix 2.   
The study will be conducted in accordance with the current version of the Declaration of Helsinki. 
The study protocol and database structure will be submitted to the Ethics Committee of the University 
Medical Center Göttingen for approval prior to the start of the study. 
 

 
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6. Relevance of the study results to the study participants 
The benefit for the study participants consists of a possible better understanding of RP2-associated 
RP and by serving as a close stakeholder to the multidisciplinary efforts to cure inherited retinal 
diseases on the Göttingen Campus. Participants will have the option to be informed with updates of 
gene therapy options as they are expected to materialize at the University Medical Center Göttingen. 
 
Göttingen, 24.10.2024          __________________                                                                                               
City, date 
 
 
Dr. Nina Bögershausen 
 
 
 
            (Study coordinator) 
 
Attachments: 
 
Appendix 2