Comprehensive Registry Research Articles

P1038 Establishing a Tertiary-Level Inflammatory Bowel Disease Service in the UAE: A Response to Rising Incidence and Service Gaps

Abstract Background Inflammatory bowel disease (IBD) is a growing public health concern in the Middle East, with the UAE experiencing a rapid rise in its incidence. Due to the predominance of private healthcare facilities, dedicated IBD services are exceedingly rare, and care is often fragmented. We outline the key initiatives undertaken to establish one of the few structured and comprehensive IBD services in the region. Methods Post-2023, our hospital initiated targeted changes to establish a tertiary care IBD service in the UAE. Through an analysis of service modifications and organizational strategies, we detail efforts to improve care delivery towards providing excellence in IBD care. Results The introduction of a structured care model has significantly improved IBD outcomes through a dedicated team of IBD-trained physicians, IBD clinical nurse specialist (CNS), and an administrator. Multidisciplinary meetings have standardized care, enabling early diagnosis, initiation and optimisation of advanced therapies (AT). The service has notably reduced corticosteroid use, indicating effective disease control. A growing comprehensive IBD registry now prospectively tracks over 320 patients on AT, providing valuable data for clinical and research needs. High-risk patient lists and virtual flare clinics have decreased hospital admissions by nearly 90%, facilitating proactive management. The service has early adoption of novel ATs and is supported by an active clinical trials program. Early initiation of AT, particularly for moderate to severe Crohn’s disease, has reduced the median time to treatment from diagnosis to 1.54 months (IQR 2.23) in 2024. Holistic IBD clinics, with access to a specialist dietitian and psychologist, have improved patient satisfaction and outcomes. CNS-led initiatives, including educational sessions on medication use, disease management, preconception and pregnancy care have significantly boosted patient engagement and health outcomes. Patient support and advocacy groups have been established, providing a platform for education and shared experiences. Additionally, Arabic versions of disease and AT patient information leaflets have been developed to enhance accessibility and understanding. Advanced IBD endoscopy, including chromoendoscopy, is now offered as standard care. Conclusion The establishment of a structured, multidisciplinary IBD service has transformed care delivery, addressing critical gaps in the regional healthcare landscape. Key initiatives have led to improved clinical outcomes, reduced hospital admissions, and enhanced patient satisfaction. This model serves as a benchmark for comprehensive IBD care in the region, demonstrating the impact of specialized, patient-centred services.

P0862 Elderly-onset inflammatory bowel disease (IBD) differs in disease characteristics and treatment exposures from adult-onset IBD

Abstract Background Elderly-onset inflammatory bowel disease (IBD) patients (age ≥60 at diagnosis) have unique characteristics and require special considerations. Using a real-life registry-based cohort, we compared disease characteristics and treatment exposures between adult-onset and elderly-onset IBD. Methods We analyzed data from a comprehensive IBD registry, comparing demographics, disease characteristics, and treatments between adult-onset (diagnosed at 18≤ age <60 years) and elderly-onset (age ≥60 at diagnosis) IBD patients diagnosed during 2000-2022 and with ≥12 months follow-up. Results We included 3307 adult IBD patients diagnosed above the age of 18 years. The median follow-up time was six years. 290 (9%) were elderly-onset IBD. In the elderly-onset group, there was a higher fraction of UC, 38.3% (111/290 IBD), compared with only 31.4% (949/3017) UC cases in the adult-onset group (p=0.02). Similarly, within the CD group, patients with elderly-onset compared to adult-onset CD presented with more colonic L2 disease (21% vs. 12%, p<0.001) and less ileocolonic L3 disease (14% vs. 29%, p<0.001). Additionally, patients with elderly-onset CD compared to adult-onset CD presented less frequently with penetrating B3 phenotype (7.4% vs. 19%, p<0.001) and with less perianal involvement (10% vs. 20%, p<0.001), respectively. Elderly-onset CD and UC patients received significantly more 5ASA (36% vs. 17%, p<0.001 in CD and 75% vs. 63%, p=0.02 in UC) and considerably fewer biologics and/or JAK inhibitors (37% vs. 56%, <0.001 in CD and 20% vs. 34%, p=0.02 in UC). There was no significant difference in surgery rates between the two age groups for CD and UC. Kaplan-Meier curve and Cox proportional hazard analyses showed significantly higher 15-year (180 months) biologic-free survival from diagnoses among elderly-onset compared to adult-onset IBD (p<0.001, Figure 1 for CD and Figure 2 for UC). There were differences between the types of first-line biologics received between the two groups, with adult-onset IBD receiving significantly more anti-TNF class medications (CD: 90% vs. 20%, p<0.001, UC 63% vs. 23%, p<0.001) and elderly-onset IBD receiving more Vedolizumab as first-line biologic (CD: 46% vs. 10%, p<0.001, UC: 68% vs. 38%, p<0.001). Conclusion This real-world registry analysis reveals that elderly-onset IBD is characterized by a higher prevalence of UC and colonic-only L2 CD, with less CD B3 penetrating and perianal disease. Treatment strategies in elderly-onset IBD favor 5-ASA and show reduced biologic use, with preferences for Vedolizumab vs anti-TNFs in elderly-onset IBD.

Impact of smoking on biological treatment response in patients from the German Severe Asthma (GAN) Registry.

Clinical studies of biologics in severe asthma exclude smokers or ex-smokers (ExS) with over 10 pack-years (py). Thus, the effectiveness of this therapy in ex-smokers with severe asthma is not well understood. To assess the impact of smoking on clinical efficiency of biologics in patients with severe asthma from the German Asthma Net (GAN), a comprehensive international registry. This analysis included 1129 patients (55.8 % females, mean age 53.82 ± 14.67) from which 56% were never-smokers (NS), while 44% were ExS (<10 py: 22.9%, 10-20 py: 10.3%, >20 py: 10.6%). They received benralizumab (38.3%), dupilumab (28.9%), mepolizumab (18.3%), omalizumab (14%), or reslizumab (0.5%). Biologic therapy significantly improved asthma control, measured by change in ACT, ACQ-5, and miniAQLQ, lung function, reduced exacerbations and daily oral prednisolone dose in all patients at week 52. Of note, no significant differences in asthma control between NS and ExS at week 52 (P=0.48, 0.09, and 0.15, respectively), were observed. Also, lung function improvement (FEV1, FVC, TLC, PEF, MEF50, P>0.05), reduction in AE (P=0.8) and OCS doses (P=0.15) were comparable in NS and ES. Markers of type 2 inflammation, such as fraction of exhaled nitric oxide (FeNO) and blood eosinophils, decreased in ex-smokers similarly to never-smokers (P=0.29 and P=0.48 respectively). In summary, ex-smokers with severe asthma experienced similar improvements in asthma control, exacerbations, lung function and biomarkers as NS after one year of biologics, suggesting that severe asthmatics even with a substantial smoking history can benefit from biologic therapy.

Current Trends in the Epidemiology and Treatment of Esophageal Cancer in South Korea.

According to 2021 statistics, esophageal cancer ranked as the 18th most common cancer and the 10th leading cause of cancer-related deaths in Korea, predominantly manifesting as squamous cell carcinoma. The incidence of esophageal cancer in Korea has been on a gradual decline, while the proportion of early-stage diagnoses has increased, leading to an improvement in the 5-year relative survival rate. The Health Insurance Review & Assessment Service, reports that around 800 esophagectomy procedures are performed each year. However, due to the absence of recent updates, there is a pressing need to establish a comprehensive nationwide registry or database for esophageal cancer and esophagectomy.

Real-Life Nationwide Outcomes of Bronchoscopic Lung Volume Reduction with Endobronchial Valves in Severe Chronic Obstructive Pulmonary Disease

Introduction: Chronic obstructive pulmonary disease (COPD) is the third leading cause of death globally, characterized by airflow limitation and lung hyperinflation due to emphysema. Bronchoscopic lung volume reduction (BLVR) with endobronchial valves offers a minimally invasive treatment option for emphysema, aiming to reduce lung hyperinflation, thereby improving lung function and exercise tolerance. Methods: This study evaluated the efficacy of BLVR in a real-life nationwide setting using comprehensive Danish registries. The study population included patients who underwent BLVR between January 1, 2013, and December 31, 2021. We assessed clinical outcomes, including forced expiratory volume in 1 s (FEV1), Medical Research Council (MRC) dyspnea score, and the rates of exacerbations and pneumonia before and after the procedure. A control cohort of matched COPD patients was also analyzed. Results: Following BLVR, a significant increase in FEV1, similar to the improvements reported in randomized controlled trials, was observed. Additionally, the proportion of patients classified as GOLD stage IV decreased from 71.3% to 60.6% after BLVR. The incidence rate ratio for severe exacerbations significantly dropped to 0.56 (95% confidence interval 0.47–0.67, p < 0.01) after BLVR. No significant changes were observed in the rates of moderate and severe pneumonia, and mortality rates did not differ significantly from those in the matched control cohort. Conclusion: This study demonstrates the real-life efficacy of BLVR using endobronchial valves, highlighting a significant improvement in FEV1 and a reduction in severe COPD exacerbations. The procedure did not increase pneumonia rates or affect mortality, supporting continued use of BLVR for managing patients with COPD.

HPV-Related Cancers in Bosnia and Herzegovina: A Comprehensive Review.

This review assesses the burden of human papillomavirus (HPV)-related cancers in Bosnia and Herzegovina (BH), aiming to inform strategies for prevention and early detection. Despite the availability of highly effective HPV vaccines and screening programs, HPV-related cancers remain a significant public health burden worldwide. We conducted a comprehensive search of PubMed and GLOBOCAN to identify all available data on HPV prevalence/genotype and HPV-related malignancies in BH, including information on HPV vaccination and cervical cancer screening. A comprehensive literature search revealed limited data on HPV prevalence and HPV-related cancers, as well as the absence of a national HPV vaccination or cervical cancer screening program in BH. In the largest study with available data from BH, HPV prevalence was 43% among women undergoing routine gynecologic exams. HPV-16 was identified as the most common cause of cervical cancer. The HPV prevalence was 50% in head and neck cancer, with HPV-18 being the most prevalent subtype. HPV was detected in 80% of patients with colorectal cancer, and HPV-16 was the most common subtype. Conclusions. HPV-related cancers, particularly cervical cancer, represent a significant public health problem in BH. Implementation of a national HPV vaccination program, along with organized cervical cancer screening is essential to reduce HPV-related morbidity and mortality. Addressing systemic challenges, such as establishing a comprehensive cancer registry, is essential for effective HPV prevention and control. Raising public awareness about HPV infection, its consequences, and the importance of prevention is essential for vaccine acceptance and promoting healthy behaviors. By investing in HPV prevention, BH can significantly improve the health and well-being of its population, particularly women.

The Burden of Gastric Cancer in Northern Central America.

Gastric cancer is the fourth leading cause of cancer-related death worldwide, with nearly one million new cases diagnosed in 2020. There is marked variation in gastric cancer incidence globally, with highest incidence rates reported in the United Nations regions of Eastern Asia, Eastern Europe, and Latin America. Although the United States is considered a low-incidence country, gastric cancer presents an important cancer disparity, with higher incidence in minoritized populations, including immigrants from high-incidence regions. The Northern Central America nations are low- and middle-income countries with a high gastric cancer incidence and large US immigrant populations. These countries lack comprehensive cancer registries, but recent GLOBOCAN-imputed gastric cancer estimates are in the range of 8 to 12/100,000 age-standardized incidence rates. Three epidemiologic studies carried out in El Salvador, Nicaragua, and Honduras demonstrate a higher than predicted burden of gastric cancer with low 5-year survival (<10%). The gastric cancer burden is projected to increase in the absence of changes to national and regional cancer control plans. Twelve evidence-based recommendations to reduce gastric cancer mortality in the Americas have recently been proposed, ranging from the "test-and-treat" Helicobacter pylori eradication strategy to endoscopic screening and surveillance programs. Translating these recommendations into a practical plan for this resource-limited setting could address the disproportionate gastric cancer burden. See related article by Peña-Galo et al., p. 1564 See related article by Ruiz de Campos et al., p. 1571 See related article by Dominguez et al., p. 1578.

Perspective of the World Rehabilitation Alliance: Global Strategies to Strengthen Spinal Cord Injury Rehabilitation Services in Health Systems.

Spinal cord injury (SCI) is a disabling condition prevalent worldwide, requiring rehabilitation services from injury through community living. This study, conducted by representatives of the World Rehabilitation Alliance (WRA), aims to identify strategies for strengthening SCI rehabilitation services globally, with particular attention to settings where resources are limited. Three focus groups were held between 2023 and 2024 with WRA representatives specializing in SCI rehabilitation. Discussions focused on four key areas: workforce and education, health policy and systems research, primary care, and emergency response. Perspectives were developed taking into account frameworks from the World Health Organization (WHO). Key insights into SCI rehabilitation services emphasize workforce and education as critical areas, underscoring the importance of specialized training, certification, and ongoing support to build capacity. In health systems and policy research, significant gaps in evidence-based practices were highlighted, emphasizing the need for comprehensive data collection and national registries to guide policy and align SCI care with global standards. The integration into primary care systems is recommended to improve access and address common complications in low- and middle-income countries (LMICs). For emergency response, this study stresses the importance of preparedness and establishing multi-disciplinary teams capable of managing SCI cases in resource-limited settings, reducing preventable complications, and improving patient outcomes. SCI rehabilitation services are essential to global health, with a need for workforce development, research, national registries, and integration into primary and emergency care. Such efforts should improve accessibility and align with global best practices, ensuring comprehensive and accessible rehabilitation for all.

Measuring quality in the care of metastatic colorectal cancer utilising available registry data: A modified Delphi study

Background and aimsThe current lack of quality indicators for patients with metastatic colorectal cancer compromises our ability to examine the quality of care delivered, and to ensure optimal patient outcomes. We sought to define a novel set of quality indicators that could be assessed using available data from a prospective comprehensive clinical colorectal cancer registry, ultimately enabling us to explore local practice and benchmark performance between institutions. MethodsWe performed a systematic review of the literature to review existing quality indicators for metastatic colorectal cancer. We engaged an expert panel of medical oncologists in a two-step modified Delphi analysis, using online questionnaires to rate and refine our initial list of candidate indicators, and to generate potential new ones. ResultsThirty-five unique quality indicators for metastatic colorectal cancer were identified from the literature. Nine of these 35 were able to be captured in TRACC, and an additional 3 novel indicators, also captured in TRACC, were added to the list to reflect current practice. After 2 online surveys of eight medical oncologists, a final list of 14 quality indicators were recommended for inclusion. ConclusionA modified Delphi method was used to propose a set of 14 novel quality indicators to be extracted from an existing comprehensive metastatic colorectal cancer clinical registry. The quality indicators intentionally encompassed critical components of modern, multi-disciplinary care, spanning the treatment continuum across diagnosis to end of life. These will be used in work underway utilising TRACC data to identify potential gaps in care and avenues for quality improvement.

Pain After Lower Limb Amputations: Insights from the Heidelberg Amputation Registry.

Background and Objectives: The experience of unpleasant sensory phenomena after lower limb amputations (LLAs), including phantom limb pain (PLP), phantom limb sensation (PLS), and residual limb pain (RLP), impacts global healthcare and adversely affects outcomes post-amputation. This study aimed to describe the distribution of PLP, PLS, and RLP among patients with LLAs registered in the Heidelberg Amputation Registry. The primary objective was to determine the prevalence of sensory abnormalities across different amputation levels and causes. Materials and Methods: In this single-center, cross-sectional study, data from 459 patients registered in the Heidelberg Amputation Registry were analyzed for the occurrence of PLP, PLS and RLP. Subsequently, logistic regression models were used to identify the independent risk factors associated with sensory disturbances following LLAs. The mean age of the LLA patients (31% female, 69% male) was 58 years (SD ± 18). Results: The patients were, on average, 44 years old (SD ± 22) at the time of amputation, with a mean duration since amputation of 15 years (SD ± 17). Transtibial amputations were the most common (43%), followed by transfemoral (39%) and partial foot amputations (10%). Hip and knee disarticulations were observed in 3.7% and 3.5% of the cohort, respectively, with hemipelvectomies accounting for 1%. Traumatic injuries (32%) and neoplastic disorders (22%) were the leading causes of LLAs, while peripheral artery disease and diabetes were responsible for 12% and 6% of cases, respectively. Importantly, a significant proportion of participants (85%) reported experiencing abnormal sensations. The prevalence rates for phantom limb pain (PLP), phantom limb sensation (PLS), and residual limb pain (RLP) were 58%, 66%, and 46%, respectively. The occurrence of sensory disturbances, with the exception of RLP, was significantly affected by the level of amputation. Notably, the age at amputation emerged as an independent risk factor for developing abnormal sensations, including PLS. Conclusions: In conclusion, this study provides a comprehensive overview of sensory abnormalities in a diverse cohort of LLA patients, highlighting the age at amputation as an important factor. The findings emphasize the role of comprehensive registries in enhancing care for individuals with amputations and guiding targeted pain management strategies.

The prevalence of threatened miscarriage in Malta

A retrospective cohort study was conducted in Malta to assess the prevalence of threatened miscarriage. The study focuses on cases managed at a local state hospital over a 12-month period. Currently, data on pregnancies prior to 22 weeks’ gestation are not publicly available, which hampers understanding of the frequency and impact of threatened miscarriage. This research provides the basis for a potential prospective study which analysis the epidemiology and outcomes of threatened miscarriage and advocates for early intervention and appropriate patient counselling. The study included females who visited the Accident and Emergency Department in a local state hospital in 2019 with first trimester vaginal bleeding. It excluded patients with incomplete medical records. Data from various hospital departments were collected, anonymised and analysed to track outcomes such as miscarriage, ongoing pregnancy, ectopic or molar pregnancy. The research aimed to create a comprehensive local registry of pregnancy outcomes following threatened miscarriage, reflecting the national situation. In 2019, 711 pregnant women in Malta experienced first-trimester vaginal bleeding. Of these, 241 had successful births beyond 22 weeks’ gestation, while 412 experienced miscarriages, with other outcomes including ectopic and molar pregnancies and 58 women had an unknown pregnancy outcome. A significant association was found between maternal age and risk of miscarriage, particularly higher for women aged 35–46 and those under 19. Birthweight data revealed that threatened miscarriage complications likely led to low birthweights in a significant proportion of newborns. This study analysed pregnancy outcomes which were preceded by first trimester vaginal bleeding in pregnant women in Malta. Establishing a local register of pregnancy outcomes following first trimester vaginal bleeding provides clinicians with enhanced insights into the current local context. This resource may improve patient counselling and informed policy decisions and lay the groundwork for future research in the field.

Predictors of Cardiac Rehabilitation Attendance and Completion: Analysis of 33,055 Patients from the Queensland Cardiac Outcomes Registry (2020–2022)

Cardiac rehabilitation (CR) under-attendance presents a global challenge. The Queensland Cardiac Outcomes Registry is a comprehensive clinical registry that routinely collects point-of-care CR data. We aimed to determine whether demographic, clinical, psychosocial, and behavioural characteristics of the population vary between those who (i) declined, (ii) commenced but did not complete, and (iii) completed CR. The cohort comprised 33,055 patients referred to one of 56 Queensland CR services extracted from the Queensland Cardiac Outcomes Registry (2020-2022). Bivariate and multivariable logistic regression analyses were used to identify factors associated with CR non-attendance and non-completion. Over the study period, 12,152 patients (37%) declined CR, 11,621 (35%) initiated but did not complete CR, and 9,282 (28%) completed CR. Significant predictors of CR non-attendance were aged ≥75 years (adjusted odds ratio [aOR] 1.51; 95% confidence interval [CI] 1.42-1.61), Indigenous status (aOR 1.65; 95% CI 1.50-1.81), living regionally (aOR 1.76; 95% CI 1.65-1.87) or remotely (aOR 2.33; 95% CI 1.92-2.82), and having arrhythmia (aOR 2.38; 95% CI 2.07-2.73), heart failure (aOR 1.54; 95% CI 1.37-1.74), non-ST-elevation myocardial infarction (aOR 1.30; 95% CI 1.21-1.40) or unstable angina (aOR 1.24; 95% CI 1.1.13-1.37). Significant predictors of CR non-completion were age <55 years (aOR 1.55; 95% CI 1.37-1.75), Indigenous status (aOR 1.60; 95% CI 1.29-1.98), living regionally (aOR 1.29; 95% CI 1.12-1.48), obesity (aOR 1.14; 95% CI 1.01-1.28), being a current (aOR 1.97; 95% CI 1.70-2.27) or former smoker (aOR:1.22, 95% CI 1.11-1.33) and having low social support (aOR 1.58; 95% CI 1.24-2.02). As one of the largest studies of CR participation to date, these findings can now be applied to develop targeted, co-designed initiatives to enhance CR participation, especially among First Nations populations, smokers, those with limited social support, people living regionally/remotely, patients with arrhythmia and heart failure, and those in varying age groups.

Uncovering Surgical Dynamics and Trends in Early Breast Cancer Stage at Diagnosis: Key Insights From a Two-Decade Argentine Database Analysis.

Breast cancer remains a major public health challenge worldwide, and understanding the trends and changes in breast cancer diagnosis and treatment over time is crucial for improving patient outcomes and guiding public health strategies. The Argentine Society of Mastology has maintained a comprehensive Breast Cancer Registry that provides valuable data for analyzing these trends. This retrospective analysis of the Breast Cancer Registry database evaluated changes in stages at the time of surgery, patterns of surgical care, and factors associated with higher stage diagnoses in patients with breast cancer in Argentina from January 2000 to December 2019. Overall, 13,239 patients met the inclusion criteria. Significant differences were observed in the axillary procedure performed, with sentinel lymph node biopsy increasing from 14.9% (2000-2004) to 69.5% (2015-2019; P < .001). A higher proportion of in situ carcinoma was detected in the last 5-year period compared with the first (11.3% v 9.4%; P = .01) and fewer patients were stage III (17.1% v 14.2%). In multivariate analysis, postmenopausal status (odds ratio [OR], 0.72 [95% CI, 0.64 to 0.80]; P < .001), health coverage (social health insurance OR, 0.53 [95% CI, 0.46 to 0.61]; P < .001 and private insurance OR, 0.36 [95% CI, 0.31 to 0.42]; P < .001), tumor grade (grade 3 OR, 2.97 [95% CI, 2.54 to 3.47]; P < .001), and phenotype (hormone receptor-positive [HR+]/human epidermal growth factor receptor 2 [HER2]+ OR, 1.36 [95% CI, 1.10 to 1.70]; P = .005; HR-/HER2+ OR, 2.14 [95% CI, 1.62 to 2.83]; P < .001; HR-/HER2- OR, 1.40 [95% CI, 1.19 to 1.66]; P < .001) were associated with the risk of diagnosis at stages II-III. Significant advances in the patterns of surgical care were identified. Numerous clinical and pathologic factors correlated with higher stage at diagnosis. However, multivariate analysis failed to show a noteworthy reduction in stage at diagnosis. This observation underscores the imperative to persistently strive to improve breast cancer care in Argentina.

Impact of atrial fibrillation on progression of tricuspid regurgitation in patients undergoing transcatheter aortic valve replacement

Abstract Background Recent advancements in interventional cardiology have spurred growing interest in atrial tricuspid regurgitation (TR) as a potential therapeutic target. Atrial TR, a form of secondary TR, arises from the dilatation and dysfunction of the right atrium, frequently seen in the context of atrial fibrillation (AF). While the concept is increasingly recognized, the natural history of TR in relation to AF remains incompletely understood. Purpose This study aims to elucidate the impact of AF on the progression of TR in patients undergoing transcatheter aortic valve replacement (TAVR). Methods Utilizing data from a comprehensive single-center TAVR registry, this study included patients who underwent TAVR between 2016 and 2023, excluding those with severe TR post-TAVR. Subjects were categorized based on the presence or absence of paroxysmal or persistent/permanent AF/atrial flutter (AFL). The study employed the cumulative incidence function to depict the progression to severe TR, considering all-cause mortality as a competing risk. Results Among 981 eligible patients, 169 (17.2%) presented with AF/AFL, with 57 (5.8%) having persistent/permanent and 112 (11.4%) paroxysmal forms. Patients with AF/AFL had a higher surgical risk, a higher prevalence of significant mitral regurgitation and TR, and a lower left ventricular ejection fraction. The median follow-up period was 366 days, with an interquartile range from 36 to 1079 days. Over a 5-year period, 11.7% of patients with AF/AFL experienced progression to severe TR, with 14.2% in those with persistent/permanent AF/AFL and 10.6% in those with paroxysmal AF/AFL, compared to merely 0.8% in patients without AF/AFL (sub-distribution HR: 7.60, 95%CI: 2.86-20.0; P&amp;lt;0.001) (Figure 1). Multivariable Fine-Gray regression analysis showed that AF/AFL was associated with the progression of TR by at least one grade, independently of the TR grade post-TAVR and other echocardiographic parameters (sub-distribution HR: 1.38, 95% CI: 1.06-1.78; p=0.015). Other factors associated with progression included the TR grade post-TAVR (sub-distribution HR: 1.20, 95% CI: 1.05-1.38; p=0.009) and the presence of a permanent pacemaker (sub-distribution HR: 1.53, 95% CI: 1.18-1.71; p=0.001) (Figure 2). Conclusions The presence of AF/AFL significantly increases the risk of developing severe TR in the long-term following TAVR, underscoring the need for vigilant monitoring and potentially preemptive management strategies in this patient cohort.

Developing a nationwide dataset of UK veterans seeking help from sector charities

Abstract Background The assistance to military veterans and their families in the UK is provided by both the NHS and over 1800 military charities. These charities count services using different definitions and reporting systems, so to date a national registry of service usage does not exist. The aim of the MONARCH study is to build a standardised registry of service usage data for the military charity sector, in order to identify patterns of use, gain insight on possible risk factors, and guide the allocation of resources. Methods Data is anonymised and a unique identifier is generated by adopting a Secure Hashing Algorithm, allowing both privacy protection and avoiding double counts. Data is standardised, and linked with an automated process to create an aggregated dataset. The dataset describes the population, using both a-priori and machine learning approaches (K-means clustering) to unveil different usage patterns. In addition, it will be linked to an online interactive dashboard. Results To date 5 national charities have shared data, for a total of 42,509 veterans with 128,423 needs. The mean age of beneficiaries was 60.1 years (SD 20.5), and 90% were male. 65% were receiving some other form of statutory benefit, 5% was homeless and 1% was imprisoned. 65% of the needs recorded concerned social wellbeing. 40% of veterans were helped at least in two different years. The k-means clustering approach based on the number of accesses, number of needs and repetition of need returned 4 subgroups of use that were identical to those created using a priori knowledge. Conclusions The dataset is the most comprehensive source of charity usage data in the UK to date. Service usage is generally homogenous among subgroups, but some differences were highlighted indicating that younger, non-officer veterans may be more at risk of presenting with more complex needs. These first useful insights can help allocate resources to build an effective preventive strategy for more complex cases. Key messages • The MONARCH dataset is the first comprehensive nationwide registry in the UK of military charity data. • The understanding of usage patterns can lead to the design of targeted preventive strategies.

Gender identity differences in age of first mental health diagnosis: A population-based study of childhood and adolescence

Abstract Introduction Gender minority (GM; i.e., trans, non-binary, and other gender diverse) individuals have an increased risk of mental health disorders, but few studies have explored disparities using population-based samples or the age of onset of this risk. Objectives The aim of the current study was to identify the age at which the gender identity disparity in physician-assessed psychiatric diagnosis and treatment for common mental health disorders can be first identified in a population-based sample linked to national health care registries. Methods All individuals aged 16 to 25 (n = 18,793) participating in the nationwide probability-based Swedish National Public Health Survey in 2018, 2020, or 2021 were included in the analyses. This sample could be linked to mental health care treatment history data in nationally comprehensive health care registries starting at age 8 years old. Results Individuals reporting a GM identity in adulthood were seven times more likely to having been diagnosed with depression and/or anxiety and about five times more likely to having been diagnosed with a neurodevelopmental disorder during childhood or adolescence compared to individuals with a cisgender identity. GM individuals’ increased likelihood of being diagnosed with depression and/or anxiety was significantly elevated from age 13, while their neurodevelopmental disorder diagnosis risk was significantly elevated from age 10, compared to cisgender individuals. Conclusions The results from this study are the first population-based evidence to show that GM individuals are more likely to be diagnosed and treated for mental health disorders early during childhood and adolescence compared to cisgender individuals. The early emergence of this increased risk requires further inquiry into causes of these early disparities. It also suggests a potential benefit of interventions that facilitate social belonging and inclusion and reduce stressors related to societal expectations of gender.

Advancing immunisation information systems: a proposal for the “unvaccinated registry”

Abstract Through a systematic review of 253 studies, we identified significant advancements in IIS functionalities including real-time data access, interoperability, and life-course vaccination records, crucial for robust public health responses. Our review reveals that vaccinations are vital for public health and societal welfare; however, vaccine hesitancy is a significant barrier, driven by complex factors. Most IIS implementations predominantly utilise web-based platforms focused on children’s vaccinations with features that enhance data interoperability and public health surveillance. Despite these advancements, gaps in vaccine coverage and hesitancy mapping persist due to suboptimal data integration and system interoperability. Parallelly, we propose a comprehensive registry that includes unvaccinated individuals, aiming to address vaccine hesitancy by integrating demographic and socio-economic data. This initiative promises to enhance health equity by providing actionable insights into vaccination gaps and facilitating targeted interventions. Ethical considerations, particularly data privacy, are paramount, as well as adhering to regulations such as GDPR to ensure the protection of personal health information. The integration of IIS with a registry that includes unvaccinated populations represents a transformative approach to public health, potentially increasing vaccine coverage and effectively informing policy decisions. This dual strategy leverages not only technological advancements but also incorporates essential behavioural insights, offering a path forward in the ongoing battle against vaccine-preventable diseases. This model aligns with the Italian National Vaccination Prevention Plan and underscores proactive, evidence-based strategies to enhance vaccination uptake, serving as a cornerstone for broader application in other national contexts.

Delivery mode and subsequent birth rate: A nationwide register-based analysis in Finland.

The study aimed to calculate the subsequent birth rate for different delivery modes, comparing them with spontaneous vaginal deliveries, using a comprehensive nationwide high-quality registry. Data from the National Medical Birth Register (MBR) were used to evaluate the birth rate after different delivery modes. All first deliveries for a mother during the years 2004 to 2016 were included. For these women, all second pregnancies from the MBR during the years 2004 to 2018 were retrieved and combined with the data of the first deliveries. A Cox regression model was used to evaluate the risk for the second pregnancy after giving birth the first time. The results were interpreted with adjusted hazard ratios (aHRs) and 95% confidence intervals (CIs). A total of 375 619 women with a first and second pregnancy leading to birth were included in this study. Of these, a total of 50 579 women underwent assisted vaginal delivery, 50 429 had an unplanned cesarean section (CS), 22 021 had elective CS, and 252 593 had spontaneous vaginal delivery as a mode of delivery in their first pregnancy. Women with assisted vaginal delivery (aHR, 1.23 [CI, 1.21-1.24]) and unplanned CS (aHR, 1.03 [CI, 1.02-1.05]) had higher birth rates after the first birth, and women with elective CS as a mode of delivery had lower birth rates (aHR, 0.86 [CI, 0.84-0.88]) when compared with women who had spontaneous vaginal delivery. The findings of this study indicate that the CS operation itself is not the only cause of the observed lower birth rate; rather, there are underlying factors that have a greater impact on birth rates.

Systematisation of the causes that required revision hip replacement, methods of their solution, treatment results in Ukraine

BackgroundThe objective of this study is to organise data on complications following total hip replacement (THA) over a span of 10 years, specifically focussing on cases that necessitated revision endoprosthetic surgeries. The objective is to create a recommendation for an All-Ukrainian registry of initial and repeated hip arthroplasty (HA) and standardise the terminology used to define “revision of total hip replacement surgery”.MethodsThe retrospective analysis examined 236 instances of revision hip arthroplasty (rTHA) performed at the Institute of Traumatology and Orthopaedics Centre between January 2005 and December 2021. The primary factors for revision were identified through an analysis of the patient’s medical records, laboratory results, visual inspection, and the state of the previously implanted prosthesis. Demographic information, primary and revision HA dates, diagnoses, and causes of complications were recorded. The statistical analysis was conducted using the Statistica package (StatSoft), version 12.6 (2015), with a significance level of p < 0.05.ResultsOut of the 364 patients who were diagnosed with complications, 236 of them (55.17%) needed a procedure called 1rTHA. Among these cases, 152 (41.76%) were specifically diagnosed with aseptic component instability. Significant factors for mechanical loosening were a high body mass index (BMI ≥ 30) and older age, with respective t-values of 2.08 (p = 0.004) and 2.59 (p = 0.045). Osteoporosis significantly contributed to aseptic loosening and fractures around the implant. The occurrence of infectious complications was frequently linked to chronic infectious diseases (t = 3.37, p = 0.001). The overall percentage of need for 2rTHA was 27.22% (43 cases), with one case of infectious lesion following the revision.ConclusionsThe study emphasises the urgent requirement for standardised terminology and a comprehensive registry for hip arthroplasty procedures. Primary results indicate that cement-free fixation is more effective than cement-based fixation for revision in patients with aseptic instability and that two-stage arthroplasty is effective for treating infectious inflammation. Furthermore, the most effective treatment for femoral fractures with periprosthetic involvement was determined to be open repositioning and osteosynthesis with metal retainers. The aforementioned observations emphasise the need to create a comprehensive registry across Ukraine to support patient care, enable evidence-based practices, and enhance the overall effectiveness of hip arthroplasty operations.Clinical trial numberNot applicable.

Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.

When the field of cancer survivorship research was in its infancy, the PROFILES registry was set up in 2004 to monitor patient-reported outcomes (PROs) in survivors and a normative population. This scoping review aims to summarize lessons learned from developing a population-based PRO registry, focusing on study methodologies, data collection shifts, data utilization, multidisciplinary collaboration, societal impact, and data sharing. A systematic computerized literature search through PubMed was performed to collect all publications using data from the PROFILES registry between January 1, 2004, and December 31, 2023. The PROFILES registry's research today encompassed 249 papers from 35 studies. Key insights include the importance of multi-hospital collaboration, which enhances participant inclusion and result generalizability. Optimizing response rates and patient inclusion is achieved through proactive data collection methods such as inclusion by health care professionals, and using both web-based and paper questionnaires. Longitudinal studies, despite their intensive data collection efforts, provide critical insights into the consequences of cancer and its treatment on patient-reported outcomes (PROs) from diagnosis through survivorship. Combining PRO data with comprehensive clinical registry data ensures reliable datasets, crucial for drawing meaningful conclusions. The shift towards multidisciplinary collaboration, open-access publishing, and data sharing all contribute to accessible and impactful research. This review highlights key insights from the PROFILES registry, emphasizing multi-hospital collaboration, proactive data collection, and the integration of PROs with clinical data. These lessons can guide future research on cancer survivorship, improving methodologies to enhance survivorship care and quality of life through multidisciplinary collaboration and data sharing.