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Background The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness. Results The registry has three-layered datasets, with European Commission-mandated data elements (EU-CDEs), a set of cross-neuromuscular data elements (NMD-CDEs) and a dataset of disease-specific data elements that function modularly (DS-DEs). The registry captures clinical, neuromuscular imaging, neuromuscular histopathology, biological and genetic data and patient-reported outcomes in a computer-interpretable format using selected ontologies and classifications. The EURO-NMD registry is connected to the EURO-NMD Registry Hub through an interoperability layer. The Hub provides an entry point to other neuromuscular registries that follow the FAIR data stewardship principles and enable GDPR-compliant information exchange. Four national or disease-specific patient registries are interoperable with the EURO-NMD Registry, allowing for federated analysis across these different resources. Conclusions Collectively, the Registry Hub brings together data that are currently siloed and fragmented to improve healthcare and advance research for neuromuscular diseases.

Background Although head injury (HI) from low- and middle-income countries (LMIC) heavily contributes to the global disease burden, studies are disproportionately less from this part of the world. Knowing the different epidemiological characteristics from high-income nations can target appropriate prevention strategies. This study aims to provide a comprehensive overview of the clinico-epidemiological data of HI patients, focusing on the existing challenges with possible solutions from a developing nation’s perspective. Methods This is a prospective, registry-based, observational study of HI in an Indian tertiary trauma-care center over 4 years. Various clinico-epidemiological parameters, risk factors, and imaging spectrum were analyzed in a multivariate model to identify the challenges faced by LMIC and discuss pragmatic solutions. Results The study included a large-volume cohort of 14,888 patients. Notably, half of these patients belonged to mild HI, despite most were referred (90.3%) cases. Only one-third (30.8%) had severe HI. Less than a third reached us within 6 h of injury. Road traffic accidents (RTA) accounted for most injuries (61.1%), especially in the young (70.9%). Higher age, males, RTA, helmet non-usage, drunken driving, systemic injuries, and specific imaging features had an independent association with injury severity. Conclusions The study represents the much-needed, large-volume, epidemiological profile of HI from an LMIC, highlighting the suboptimal utilization of peripheral healthcare systems. Strengthening and integrating these facilities with the tertiary centers in a hub and enhanced spoke model, task sharing design, and efficient back-referrals promise effective neurotrauma care while avoiding overburden in the tertiary centers. Better implementation of road safety laws also has the potential to reduce the burden of HI.

Some patients with large vessel occlusion (LVO) achieve insufficient clinical improvement (futile recanalization, FR) after intravenous thrombolysis (IVT) during inter-hospital transfer for thrombectomy, while others show good outcomes (effective recanalization, ER). This study assessed FR and ER rates among patients treated with IVT at non-thrombectomy primary stroke centers (PSCs) and aimed to identify predictors of FR. We analyzed data from two PSC registries (2016–2022). Inclusion criteria: IVT treatment, anterior circulation LVO, NIHSS ≥ 6, ASPECTS ≥ 5, and documented recanalization at thrombectomy centers. FR was defined as a 90-day poor outcome (mRS 3–6) despite LVO recanalization on initial angiography. Among 190 PSC patients with documented recanalization post-IVT, 113 (59.5%) had FR. Multivariable analysis identified age (OR = 1.03, 95%CI = 1.01–1.07, p = 0.021), NIHSS at the PSC (OR = 1.13, 95%CI = 1.05–1.22, p = 0.026), and collateral status (OR = 0.54, 95%CI = 0.39–0.75, p = 0.001) as independent predictors of FR and 90-day mortality. A model combining age, NIHSS, and collateral score provided the highest predictive accuracy for FR and mortality. FR is common in LVO-related ischemic stroke treated with IVT at non-thrombectomy centers. FR is common in LVO-related ischemic stroke treated with IVT at non-thrombectomy centers. Identifying predictors of FR can guide clinicians in early decision-making, allowing for tailored interventions and informed discussions about expected outcomes, potentially leading to more optimized patient management. The GOTIC-VTE trial Unique identifier, jRCTs031180124; Registration date, April 06, 2017. Graphical Abstract

The European Union's General Data Protection Regulation (GDPR) has profoundly influenced health data management, with significant implications for clinical data warehouses (CDWs). In 2021, France pioneered a national framework for GDPR-compliant CDW implementation, established by its data protection authority (Commission Nationale de l'Informatique et des Libertés). This framework provides detailed guidelines for health care institutions, offering a unique opportunity to assess practical GDPR implementation in health data management. This study evaluates the real-world applicability of France's CDW framework through its implementation at a major university hospital. It identifies practical challenges for its implementation by health institutions and proposes adaptations relevant to regulatory authorities in order to facilitate research in secondary use data domains. A systematic assessment was conducted in May 2023 at the University Hospital of Rennes, which manages data for over 2 million patients through the eHOP CDW system. The evaluation examined 116 criteria across 13 categories using a dual-assessment approach validated by information security and data protection officers. Compliance was rated as met, unmet, or not applicable, with criteria classified as software-related (n=25) or institution-related (n=91). Software-related criteria showed 60% (n=15) compliance, with 28% (n=7) noncompliant or partially compliant and 12% (n=3) not applicable. Institution-related criteria achieved 72% (n=28) compliance for security requirements. Key challenges included managing genetic data, implementing automated archiving, and controlling data exports. The findings revealed effective privacy protection measures but also highlighted areas requiring regulatory adjustments to better support research. This first empirical assessment of a national CDW compliance framework offers valuable insights for health care institutions implementing GDPR requirements. While the framework establishes robust privacy protections, certain provisions may overly constrain research activities. The study identifies opportunities for framework evolution, balancing data protection with research imperatives.

Aims Heart failure (HF) is a progressive disease in which periods of clinical stability are interrupted by episodes of clinical deterioration known as worsening heart failure (WHF). Patients who develop WHF are at high risk of subsequent death, rehospitalization, and excessive healthcare costs. As such, WHF could be seen as a separate disease stage and precursor of advanced HF. Whether WHF has a substantial health, societal, and economic impact evidence regarding its multifactorial nature and the specific barriers in treatment, including advanced HF therapies, remains scarce. The CHAIN‐HF registry aims to describe the incidence, characteristics, current treatment, and outcomes of WHF. Additionally, it will promote structured regional collaboration and educate on increasing awareness for WHF and describe the implementation of guideline directed medical therapy and utilization of advanced HF therapies in a collaborative network. Methods and results The CHAIN‐HF registry is a prospective, observational, and multicentre study from the collaborating hospitals (Rijnmond HF Network) in the Rotterdam area. Unselected and consecutive patients (irrespective of ejection fraction) with a WHF event will be included. Comprehensive data including demographics, co‐morbidities, treatment, and in‐hospital and post‐discharge outcomes will be collected. Notably, data on socio‐economic status, treatment decisions, and referral for advanced HF therapies will be included. Conclusions CHAIN‐HF will be the first prospective, dedicated WHF registry in a collaborative network of hospitals that will provide robust real‐world evidence on the incidence, characteristics, and outcomes of WHF. Moreover, it will provide information on of the value of regional collaboration to improve awareness and outcomes of WHF.

At the second series of workshops for the EHC Think Tank Workstreams on Registries, Hub and Spoke Model and Patient Agency, stakeholder participants worked towards consensus on addressing challenges to progress in areas identified in the first series of workshops. Each workshop identified a ‘guiding star’ determining the direction of ongoing focus, defined achievable ‘near star’ milestones, and explored the enablers and ‘constraints’ to achieving these.