4,676 Results Found

Drug induced liver injury (DILI) is a rare but well recognized serious adverse reaction. Pre-marketing studies may not detect liver injury, and DILI becomes very often apparent after the drug is launched to the market. Specific biomarkers for DILI pr...

Background: This study aims to characterize the clinical features and outcomes of tattoo-associated sarcoid-like uveitis using a multicenter uveitis registry given the limited existing data. Design: This is a retrospective study. Participants: Ten pa...

Chronic pulmonary aspergillosis (CPA) is a chronic fungal infection of the lung associated with high morbidity and mortality. The CPA Research network (CPAnet) registry established in 2018 is an international multicenter collaboration aiming to impro...

Hemophilia is a rare heredity bleeding disorder that requires treatment for life. While few therapeutic options were available in the past, multiple recent breakthroughs have fundamentally altered and diversified hemophilia therapy, with even more ne...

Rare disease (RD) registries aim to promote data collection and sharing, and facilitate multidisciplinary collaboration with the overall aim of improving patient care. Recommendations relating to the minimum standards necessary to develop and maintai...

Lifestyle and physical characteristics affect body weight, and understanding these factors improves the precision of weight loss treatment. Many obese patients in Korea are receiving Korean medicine (KM) treatment, including herbal medicine and acupu...

A necessary and effective coordination between cadastre and land registry has always existed in Spain, but the difficulties have only been specifically addressed in the last few years. The aim of this study is to illustrate, analyse, and evaluate adv...

Traditional cancer registries have often been siloed efforts, established by single groups with limited objectives. There is the potential for registry data to support a broad range of research, audit and education initiatives. Here, we describe the...

The Windows registry contains a plethora of information in a hierarchical database. It includes system-wide settings, user preferences, installed programs, and recently accessed files and maintains timestamps that can be used to construct a detailed...

Background: The human brain relies on complex synaptic communication regulated by key genes such as SYNGAP1. SYNGAP1 encodes the GTPase-Activating Protein (SYNGAP), a critical synaptic plasticity and neuronal excitability regulator. Impaired SYNGAP1...

Emergency Departments (ED) play a vital role within the health system, representing the ‘front door’ to hospitals, the first point of hospital contact for patients who are undifferentiated and may be critically ill. They also serve as a s...

Background/Objective: Diabetes registries that enhance surveillance and improve medical care are uncommon in low- and middle-income countries, where most of the diabetes burden lies. We aimed to describe the methodological and technical aspects adopt...

The KOSovan Acute Coronary Syndrome (KOS-ACS) Registry is established as a prospective, continuous, nationwide, web-based registry that is operated online. The KOS-ACS registry is designed with the following objectives: (1) to obtain data on the demo...

Porphyrias, as most rare diseases, are characterized by complexity and scarcity of knowledge. A national registry in one of the largest European populations that prospectively collects longitudinal clinical and laboratory data are an important and ef...

Advances in technologies offer new opportunities to collect and integrate data from a broad range of sources to advance the understanding of rare diseases and support the development of new treatments. Prader–Willi syndrome (PWS) is a rare, com...

Background: Atrial fibrillation (AF) and chronic kidney disease (CKD) often coexist, but the real-world data after approval of direct oral anticoagulants (DOACs) are still lacking in Japan. We investigated the association of the baseline renal functi...

The purpose of this review is to evaluate various challenges and opportunities as well as propose solutions for the development and implementation of a prospective COVID-19 patient registry within a regional context in the Philippines. To comprehensi...

Malicious actors often exploit persistence mechanisms, such as unauthorized modifications to Windows startup directories or registry keys, to achieve privilege escalation and maintain access on compromised systems. While information technology (IT) t...

This paper investigates the social, demographic, and economic factors determining differences between forest identification based on remote sensing techniques and land registry. The Database of Topographic Objects and Sentinel-2 satellite imagery dat...

Background: Thromboembolic events are frequent among patients with inflammatory bowel disease (IBD). However, there is little information on the prevalence, features and outcomes of splanchnic vein thrombosis (SVT) in patients with IBD. Aims: To desc...

A registry of patients with idiopathic pulmonary fibrosis (IPF) was founded in Russia in 2016. The aim of this study was to analyze the demographic, clinical, functional, radiological, and morphological data of the patients included in this registry....

Takotsubo syndrome (TTS) during the peripartum period is a relevant cause of morbidity in this population; its clinical course and prognosis, compared to the general TTS population, is yet to be elucidated. Our aim was to analyze the clinical feature...

Background: Recording real-time data of vaccinations performed, vaccine stocks, and adverse events following immunization is a particularly useful activity in the effective development of any vaccination campaign or vaccination program, guiding the d...

Mesothelioma, a cancer of mesothelial cells that line the chest, lungs, heart, and abdomen, is a relatively rare disease. In the United States, approximately 3000 individuals are diagnosed with mesothelioma annually. The primary risk factor for mesot...

Background and Objectives: Since silicone breast implants were introduced to the market several decades ago, the safety of breast implants has remained controversial. Recently, several studies have explored breast implant-associated anaplastic large-...

Background and Objectives: A hospital-based stroke registry is a useful tool for systematic analyses of the epidemiology, clinical characteristics, and natural course of stroke. Analyses of stroke registry data can provide information that can be use...

The FeverApp registry is an ambulant ecological momentary assessment (EMA) model registry focusing on research of fever in children. Verification of EMA reliability is a challenge, due to absence of other source data. To ensure the reliability of EMA...

Data science and machine-learning techniques help banks to optimize enterprise operations, enhance risk analyses and gain competitive advantage. There is a vast amount of research in credit risk, but to our knowledge, none of them uses credit registr...

Background: Manual data collection is still the gold standard for disease-specific patient registries. However, CAPRI-3 uses text mining (an artificial intelligence (AI) technology) for patient identification and data collection. The aim of this stud...

Background: To compare the characteristics of a “real world” population included in a prospective registry to patients enrolled in a randomized, controlled trial (RCT) after endovascular revascularization (EVR) for symptomatic peripheral...

Background: Mitral valve regurgitation (MR) is associated with an impaired prognosis. Due to its frequently asymptomatic presentation, MR often leads to undertreatment, which can delay diagnosis. In addition, the optimal timing and choice of interven...

Fibrosis transmembrane conductance regulator (CFTR) modulators (CFTRms) have significantly improved outcomes in people with cystic fibrosis (CF). Real-world evidence, particularly from national and international CF registries, is essential to assess...

Providing a system user with a unique and secure identity is a prerequisite for authentication and authorization aspects of a security system. It is generally understood that the existing digital identity systems store the identity details in central...

In Italy, the surveillance of people with bleeding disorders is based on the National Registry of Congenital Coagulopathies (NRCC) managed by the Italian National Institute of Health (Istituto Superiore di Sanità). The NRCC collects epidemiological a...

Background: The identification of pathogenic variants in the Breast Cancer Genes 1 and 2 (BRCA1/2) is a critical predictive biomarker for poly (ADP-ribose) polymerase inhibitor (PARPi) therapy in epithelial ovarian cancer (EOC). The aim of this study...

Background: The Angelman Syndrome Registry (RISA) was developed as a retrospective study with the following objectives: to evaluate the clinical history of individuals with Angelman Syndrome (AS) in Italy and compare it with the existing literature;...

Background and objective: Management of outpatients with stable coronary artery disease (CAD) is important in secondary prevention. The objective was to describe differences in the characteristics of CAD patients in Latvia compared with other countri...

Cystic Fibrosis (CF) registries are an essential resource of epidemiological and clinical data. Although the median age at diagnosis is usually reported in the first months of life, a minority of individuals is diagnosed during adulthood. The aim of...

The registry project led by the Japanese Society for Clinical Transcranial Magnetic Stimulation (TMS) Research aims to establish a centralized database of epidemiological, clinical, and biological data on TMS therapy for refractory psychiatric disord...

Fatal dog attacks are rare but devastating events with significant public health, forensic, and legal implications. Italy lacks a centralized registry for such incidents, limiting the ability to monitor trends and implement preventive strategies. Thi...

Immune-compromised patients (IPs) are at high risk for infections, some of which are preventable by vaccines. Specific vaccines are recommended for IP; however, the vaccination rate is suboptimal. The aim of this study is to describe the development...

Background: Over the past decades, efforts have been made to improve the nutritional well-being of people with cystic fibrosis (pwCF). Due to the correlation observed between nutritional indices and lung function, prevailing recommendations consisten...

Efficient information management and precise discovery of heterogeneous sensors in the Geospatial Sensor Web (GSW) are a major challenge. Intelligent sensor management requires a registry service to store and process sensor information efficiently. I...

Background: Despite the fact that a considerable number of patients diagnosed with childhood-onset rare diseases (RD) survive into adulthood, limited information is available on the epidemiology of this phenomenon, which has a considerable impact bot...

Background: The emergency department (ED) often represents the entry point to care for patients that require urgent medical attention or have no alternative for medical treatment. This has implications on scope of practice and how quality of care is...

Objective: There is scarce reporting of radial head fracture epidemiology and patient characteristics beyond age and sex. This study aimed to describe demographic, socioeconomic, and injury pattern characteristics for people sustaining a radial head...

The global maritime industry faces a conflict between economic competition and sustainability standards. Economic pressure often incentivizes ship registries toward regulatory leniency, degrading environmental and social standards. Traditional static...

A sensor registry system (SRS) registers sensor metadata and provides them for a seamless semantic process. Recently, network coverage information-based SRS (NC-SRS) was developed to provide sensor information filtering by combining path prediction a...

Current best practices in tumor registries provide a glimpse into a limited time frame over the natural history of disease, usually a narrow window around diagnosis and biopsy. This creates challenges meeting public health and healthcare reimbursemen...

Background/Objectives: Progress in diagnostic and therapeutic strategies has resulted in an increasing prevalence of adults with congenital heart disease (ACHD), including those involving genetically determined syndromes. This study aimed to characte...