bluuebunny/crossref_metadata_2025_split huggingface dataset:
N28 The UK Inflammatory Bowel Disease Reasearch Network ; Preliminary results from advanced therapies in Inflammatory Bowel Disease a multi-centre evaluation of current practice
Authors: Cairnes V , Devine D , Wen S , Owen H , Mason I , KIrkham B , Harrision W , Diaz R , Robinson K , Chan M , Campbell R , Tyrrell T , Gray L , Clarke M , Hawkins S , LLoyd-Ford G , Avery P ,   The UK Inflammatory Bowel Disease Nurse Research Network
Published: January 2025

Abstract

Background
In early 2024, 25 research-ready nurses specialising in IBD joined the United Kingdom IBD Nurse Research Network (UK IBD NRN). This network is dedicated to collaborating on national service evaluation and research initiatives, aiming to enhance service delivery and improve patient experiences within IBD care. Each year, the network will undertake one project, with a ballot for ideas held towards the end of the project. The first initiative focuses on monitoring advanced therapies (AT-IBD) used in the UK for treating IBD.
Current recommendations for monitoring advanced therapies in IBD remain ambiguous, and the efficacy of proactive therapeutic drug monitoring (TDM) is still uncertain. To address this, we sought to explore the variations in monitoring practices across IBD services in the UK, focusing on key areas such as access to medication, adherence to monitoring protocols, and the effectiveness of therapeutic drug monitoring.

Methods
Data collection instruments using REDCap were created and launched in November 2024. Data includes site demographics, a minimum of ten and a maximum of 25 reactively and proactively monitored cases. The case data is collected from retrospective monitoring events and anonymised. Descriptive statistics are used to report results.

Results
Seventeen unique users are entering data from 15 sites. The survey is open to all four nations of the UK. Responses have been received in England and Wales. Of the 17 users (15;82.4%) reported having had training to interpret blood results. IBD patient population was reported by seven out of eleven sites, with a total of 39,843 reported. Two sites shared the entire local population, and three were reported as unknown. The seven sites that reported the IBD patient population used an electronic health record. There is variance in the pre-screening undertaken (Figure 1);
access to advanced therapies appears different, with some sites not having access to newer small-molecule medications (Figure 2).
There is wide variation in routine and TDM frequency across all therapies.

Conclusion
The AT-IBD project is ongoing, with full results anticipated to provide insights into current practices for monitoring advanced therapies in the UK. The collected data may offer valuable insights regarding adherence and the effectiveness of advanced therapy monitoring, particularly concerning patient safety and outcomes. The UK IBD NRN remains committed to providing opportunities for training, collaboration, and research for IBD nurses across the UK.
N46 Exploring the impact of initiating a Patient Reported Outcome Measure (PROM) by utilising an Inflammatory Bowel Disease (IBD) pre clinic questionnaire prior to patients attending an IBD outpatients clinic
Authors: Scott G 
Published: January 2025

Abstract

Background
Initiating a Patient Reported Outcome Measure (PROM) through an Inflammatory Bowel Disease (IBD) pre-clinic questionnaire can have a significant impact on the management and outcomes of patients attending an IBD outpatient clinic. This includes improved patient-centred care by enhanced understanding of the patient experience and targeted consultations, improved clinical outcomes, enhanced communication and shared decision making and increased efficiency and resource utilisation.

Methods
The PROM pre-clinic questionnaire was designed by the Consultant Nurse and was sent to a sample group of patients with IBD for their thoughts. The Consultant Nurse was keen to hear the views of the patients on the suitability of the questions, length of the questionnaire, any topics not covered in the questionnaire, and why we are requesting this to be completed prior to clinics. This exercise proved very popular with the patients as they felt that we really wanted to know what they thought and that they were involved from the start.

Results
Initiating a Patient Reported Outcome Measure (PROM) through an IBD Pre-Clinic Questionnaire has led to a number of significant improvements within the clinic for both patients and service alike, This includes early identification and interventions for patients, individualised treatment plans, better understanding of patient concerns, increased patient engagement, efficient use of clinic time, and quality improvement initiatives. The main improvement is that the patients loves it as it gives them the vehicle to highlight their concerns. The PROM pre-clinic questionnaire was started on one clinic and is now used on all of my clinics. Now we know that the system works we will be sending this questionnaire to our patients virtually prior to each clinic and will be rolling this out to all nurse led clinics.

Conclusion
Initiating a Patient Reported Outcome Measure (PROM) using an IBD pre-clinic questionnaire has the potential to significantly enhance the management of IBD in outpatient settings. It improves patient-centred care, clinical outcomes, communication, efficiency, and overall patient engagement and satisfaction. While there are challenges to implementation, the benefits for both patients and healthcare providers make a compelling case for the adoption of PROMs in IBD management.
N47 Implementation of a Nurse Led Vaccination clinic for Inflammatory Bowel Disease patients
Authors: O Sullivan C , Keogh A , Sugrue K , Gleeson S , McCarthy J , Buckley M , Moran C , Sheehan D , McDonald C , O Brien L , Twomey R 
Published: January 2025

Abstract

Background
Patients over the age of 50 years and those who are on immunosuppressive therapy are at increased risk of contracting Herpes Zoster (Shingles). Most recent international (ECCO) guidelines have recommended that all patients commencing on JAK inhibitors be vaccinated to ensure optimum protection against the Shingles Virus. Shingrix (non-live) vaccine is available in Ireland but is not reimbursed by the HSE, therefore patients are required to pay privately. Unfortunately, due to the significant cost of receiving this vaccine in the community the uptake among IBD patients is minimal.
The aim of this clinic was:
•To provide optimum protection against the Shingles virus to all IBD patients commencing on a JAK inhibitor
•To eliminate the burden of shingles for immunocompromised patients with IBD
•To ensure evidence-based practice is adhered to in line with national and international guidelines
•To provide a nurse led vaccination clinic for patients with IBD
•To ensure that all patients with IBD have equal access to Shingrix

Methods
We negotiated with the pharmacy department to ensure all patients on JAK inhibitors have access to Shingrix vaccination at no cost to the patient. A business case was submitted to the Mercy University Hospital Drugs and therapeutics board. Vaccination protocol was designed with key stakeholders, which was then communicated to all team members. A weekly nurse led vaccination clinic was established in October 2023. Vaccination administration given in two consecutive doses as per guidelines.

Results
Since the launch of the weekly nurse led vaccination clinic, 196 vaccinations have been administered to date, with 98 patients fully vaccinated with Shingrix (non-live vaccination). JAK inhibitor treatment can now be commenced without delay, resulting in increased patient satisfaction with the IBD service. Of the vaccinated patients, to date, none have developed Shingles.

Conclusion
This nurse led project has ensured that patients with IBD who require treatment with a JAK inhibitor can now avail of vaccination in line with national and international guidelines resulting in increased patient service satisfaction and reassurance following vaccination with nil adverse effects experienced from patients.

References
T Kucharzik, P Ellul, T Greuter, J F Rahier, B Verstockt, C Abreu, A Albuquerque, M Allocca, M Esteve, F A Farraye, H Gordon, K Karmiris, U Kopylov, J Kirchgesner, E MacMahon, F Magro, C Maaser, L de Ridder, C Taxonera, M Toruner, L Tremblay, M Scharl, N Viget, Y Zabana, S Vavricka, on behalf of the European Crohn’s and Colitis Organisation [ECCO], ECCO Guidelines on the Prevention, Diagnosis, and Management of Infections in Inflammatory Bowel Disease, Journal of Crohn's and Colitis, Volume 15, Issue 6, June 2021, Pages 879–913, https://doi.org/10.1093/ecco-jcc/jjab052
N48 Fatigue in Inflammatory Bowel Diseases: A Bibliometric and Content Analysis
Authors: Terzi A , Artan Y , Yıldırım Y , Deveci Kocakoç İ 
Published: January 2025

Abstract

Background
Fatigue in inflammatory bowel diseases is a symptom that can significantly affect quality of life and comfort, which can bring symptoms such as sleep disorders and pain. In this study, a bibliometric analysis of studies on fatigue in inflammatory bowel diseases was conducted.

Methods
The analysis of the study was conducted with the biblioshiny program, which is the application of the bibliometrix package. Studies conducted between 1987 and 2024 were included in the search. The search was performed using the keywords "IBD", "Inflammatory Bowel Disease", "ulcerative colitis", "Crohn's disease" and "fatigue". A total of 520 studies were reached, 288 articles remained when book chapters and proceeding papers were excluded, these studies were also reviewed by three experts, and when irrelevant publications were excluded, a total of 238 articles were analyzed.

Results
According to the results of the analysis, the years with the highest number of studies were 2023, 2022 and 2021, respectively. The top three journals with the most publications were Journal of Chrons & Colitis, Inflammatory Bowel Diseases, Alimentary Pharmacology and Therapeutics (Figure 1). The country with the highest number of publications on the subject is the Netherlands. Most relevant words quality of life, crohns disease and depression (Figure 2).

Conclusion
The study results show that there has been an increase in studies on IBD and fatigue in recent years. The pandemic period may be one of the factors in this increase. The prominence of words such as quality of life and depression indicates that fatigue is closely related to psychological problems and quality of life. Therefore, it is recommended that future studies on IBD should address the multidimensional aspects of fatigue and investigate the effects of these conditions on treatment and care.

References
Nocerino, A., Nguyen, A., Agrawal, M., Mone, A., Lakhani, K., & Swaminath, A. (2020). Fatigue in inflammatory bowel diseases: etiologies and management. Advances in therapy, 37, 97-112. Van Langenberg, D. R., & Gibson, P. R. (2010). Systematic review: fatigue in inflammatory bowel disease. Alimentary pharmacology & therapeutics, 32(2), 131-143.
Van Langenberg, D. R., & Gibson, P. R. (2010). Systematic review: fatigue in inflammatory bowel disease. Alimentary pharmacology & therapeutics, 32(2), 131-143.
N51 How to guide, for selecting and managing High Cost Drugs in Inflammatory Bowel Disease (IBD)
Authors: Scott G , Abreu B 
Published: January 2025

Abstract

Background
We developed this guide as our gastroenterology consultants requested a tool which summarise biologics/small molecules guidelines to help with decision making in regards to starting, escalating or switching treatment, without requiring extensive research. This would allow junior doctors to be familiar with these IBD drugs. This guide is being used by consultants, in teaching sessions with junior doctors and distributed on the wards. To assess the benefits, we aim to use a questionnaire so we can improve.

Methods
This started in March 2024 and a first copy was distributed with doctors in April 2024. The document was developed to be concise and made in 2-pages. As requested, includes drug class, brand, administration route, induction, maintenance, option to escalate dose, pre-screening and routine bloods, contraindications, common side effects and age range. Most doctors are aware of the drug but not on administration route or monitoring which can influence the choice. We noted during IBD clinics that sometimes the biologic suggested does not fit patients’ lifestyle, which requires re-discussion with consultant for a more suitable option, which delays treatment. To evaluate this project, we are taking verbal feedback and aim to use a questionnaire among experienced consultants and junior doctor.

Results
The guide is being used during teaching session given by IBD lead to junior doctors and they say this is a resourceful tool for their knowledge development and consolidation. We do not have results from questionnaires but we aim to collect and analyse. One gastroenterology consultant emailed “Great initiative and very practical guide!” Doctors discuss with patients the options accurately and when attending IBD clinic they are aware of the options allowing an informed decision for a drug which suits their lives, and start as soon as possible. On the wards, teams are aware of some IBD treatments, this allows them to arrange the necessary pre-screening while waiting IBD review.

Conclusion
For this to continue to be updated, we will follow the latest studies. Some individuals have concerns because of the lack of experience. If they have the main guideline available, this will bring more confidence and allows space for treatments to be compared. Administration route, blood monitoring and socioeconomic factors can affect the medication that we chose for patients, it is essential that when counselling, doctors are also aware of this. Most recently, patients are referred to IBD team with a clearer plan and more aware of the implications. Following positive feedback, we are planning other guides for mesalazine and corticosteroids. This can be shared with other departments with IBD patients, such as endoscopy and surgical wards.
Perianal Crohn’s disease across borders – understanding unmet needs to aid future global solutions
Authors: Hart A 
Published: January 2025

Abstract

Background and aims
Perianal Crohn’s disease (pCD) represents a challenging manifestation of CD, with a high symptomatic and psychological burden for patients. Epidemiologic differences in this CD phenotype have been reported across the world. At ECCO 2020, a Consortium was established to address pCD. An initial project was the development of a new classification of perianal fistulising Crohn’s disease (PFCD) (Geldof et al. LGH 2022). It has now developed “standard operating procedures” (SOPs) for clinical, radiologic and biosample collection, to facilitate consistent and collaborative research. Aims: Now, the Consortium’s goals are to expand and support low- and middle-income countries (LMICs), to 1) build data collection platforms to explore phenotypic similarities and differences across continents in PFCD regarding demographics, diagnosis (including issues around delayed diagnosis), treatments, outcomes and molecular architecture (using transcriptomic techniques); and 2) enable infrastructural developments at collaborating sites to support future IBD research and education, using PFCD as the template.

Methods
Collaborations have been established with Asia, South America and Africa. Data collection templates developed by the Consortium (with a data dictionary) will be used to interrogate a cohort of patients with PFCD (demographics, disease distribution, diagnosis pathways, treatment outcomes – both medical and surgical). Additionally, data will be collected from an inception cohort of patients with new PFCD. Biosample collection and banking will be conducted, prioritising new diagnosis/treatment-naïve patients and will focus on transcriptomic research (where pilot data points to differences).

Anticipated impact
This proposal will address each item of ECCO’s 5-year REACH strategy. It will assess time to diagnosis, equitable access and sustainable healthcare, probe pathogenic drivers of this CD-phenotype and address the holistic impact of PFCD in different parts of the world. Importantly, it will drive learning, understanding and education to improve care for pCD patients globally and establish networks and infrastructure for wider IBD research.
Prevalence, clinical and anorectal function characterization of faecal incontinence and rectal urgency in ulcerative colitis patients (HOPE Study)
Authors: Casanova M J , Gisbert J P , Santander C , Alcaide M J , Barbeito E e , Barreiro de Acosta M , Bermejo E , Carrión S , Cuevas del Campo L , de Benito M , Rubín de Célix C , García Alonso J , Fe García-Sepulcre M , Hernández Camba A , Huguet J M , Matallana V , Rodríguez D M , Opio V , Muñiz M P , Ramos L , Riestra S , Sanahuja A , Sequeiros M D , Sierra Moros E , Torra S 
Published: January 2025

Abstract

Background and aims
Faecal incontinence (FI) and rectal urgency (RU) are underestimated and underdiagnosed in ulcerative colitis (UC) patients. Our primary aim is to evaluate the prevalence and severity of FI and/or RU in UC patients. Secondary aims include investigating the causes of FI and/or RU, identifying factors associated with FI and/or RU, and describing anorectal function in UC patients in remission who report these symptoms.

Methods
This is a prospective, multicentre study with two parts. The first part is an epidemiological analysis involving 667 UC patients, in whom the prevalence of FI and/or RU will be assessed. The second part focuses on characterizing anorectal function in patients who report FI and/or RU while in remission. As per clinical practice, an endoscopic study will rule out disease activity as a cause of symptoms in all patients reporting FI and/or RU in the first part. Those confirmed to be in remission will proceed to the second part, where anorectal function will be evaluated using high-resolution anorectal manometry. Therapeutic strategies for FI and RU will be proposed following clinical practice guidelines, and we will record responses to these treatments and their impact on symptom severity. Additionally, we will assess the impact of these therapeutic strategies on patients' quality of life.

Anticipated impact
To provide effective therapy for FI and/or RU in UC patients, it is essential to understand their prevalence during both active disease and remission, as well as the underlying mechanisms in remission. Our study aims to reveal the true prevalence of FI and RU in UC patients, expand knowledge of anorectal function in those in remission, and help identify therapeutic targets to alleviate these burdensome symptoms, ultimately improving quality of life for affected individuals.
Divergence in genetic (co)variances and the alignment of gmax with phenotypic divergence
Authors: Jarvis Will M C , Careau Vincent , Rundle Howard D 
Published: January 2025

Abstract
To better understand the sources of biological diversity in nature, we need information on the mechanisms underlying population divergence. Biological systems with patterns of naturally occurring adaptive variation among populations can provide insight into the genetic architecture of diverging traits and the influence of genetic constraints on responses to selection. Using a system of reproductive character displacement in the North American mushroom-feeding fly Drosophila subquinaria, we assessed patterns of genetic (co)variance among a suite of chemical signaling traits and divergence in this pattern among populations. D. subquinaria exhibits stronger reproductive isolation against the closely related Drosophila recens in sympatry, where both female mating preferences and male chemical signaling traits have diverged from the ancestral allopatric populations. We collected 3 wild populations from each region and, in the lab, characterized the phenotypic divergence in these traits, as well as the additive genetic (co)variance structure (G-matrix), via replicate breeding designs. We found divergence between allopatric and sympatric D. subquinaria in the shape and size of the G-matrix, and that the leading axis of genetic variance (gmax) had changed in sympatry to come into alignment with the primary axis of phenotypic divergence between the sympatric and allopatric regions.
The Afterlives of Transitional Justice
Authors: Zvobgo Kelebogile , Parente Francesca 
Published: January 2025

ABSTRACT∞
Rising authoritarianism, far-right parties and violent political movements in the 21st century prompt scholars and practitioners to revisit two foundational assumptions in the transitional justice field, which was established in the 20th century amid the third wave of democratization. The first is that transitional justice is a consequence and a cause of democratic transition and consolidation. The second is that transitional justice has been a successful global project. Current political developments challenge us to take stock of the field and consider the implications for current and future scholarship and practice. In this introduction to the ‘Afterlives of Transitional Justice’ special issue of the International Journal of Transitional Justice (IJTJ), we first reflect on the many forms (‘lives’) that transitional justice has taken over the decades. The contributions address transitional justice’s life in three ways: as the transition to democracy, as the tools and processes themselves and as an academic and practice field. We then consider evolution and change in transitional justice (‘afterlives’). In increasingly perilous times for human rights, we hope that the insights gathered in these pages will help affected communities, activists, practitioners, policymakers and scholars look back in order to move forward and uphold the promise ‘Never again!’
Evaluating dimensionality reduction of comorbidities for predictive modeling in individuals with neurofibromatosis type 1
Authors: Gupta Aditi , Hillis Ethan , Oh Inez Y , Morris Stephanie M , Abrams Zach , Foraker Randi E , Gutmann David H , Payne Philip R O 
Published: January 2025

Abstract

Objective
Dimensionality reduction techniques aim to enhance the performance of machine learning (ML) models by reducing noise and mitigating overfitting. We sought to compare the effect of different dimensionality reduction methods for comorbidity features extracted from electronic health records (EHRs) on the performance of ML models for predicting the development of various sub-phenotypes in children with Neurofibromatosis type 1 (NF1).

Materials and Methods
EHR-derived data from pediatric subjects with a confirmed clinical diagnosis of NF1 were used to create 10 unique comorbidities code-derived feature sets by incorporating dimensionality reduction techniques using raw International Classification of Diseases codes, Clinical Classifications Software Refined, and Phecode mapping schemes. We compared the performance of logistic regression, XGBoost, and random forest models utilizing each feature set.

Results
XGBoost-based predictive models were most successful at predicting NF1 sub-phenotypes. Overall, features based on domain knowledge-informed mapping schema performed better than unsupervised feature reduction methods. High-level features exhibited the worst performance across models and outcomes, suggesting excessive information loss with over-aggregation of features.

Discussion
Model performance is significantly impacted by dimensionality reduction techniques and varies by specific ML algorithm and outcome being predicted. Automated methods using existing knowledge and ontology databases can effectively aggregate features extracted from EHRs.

Conclusion
Dimensionality reduction through feature aggregation can enhance the performance of ML models, particularly in high-dimensional datasets with small sample sizes, commonly found in EHRs health applications. However, if not carefully optimized, it can lead to information loss and data oversimplification, potentially adversely affecting model performance.