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Genetic Databases and Online Ring Chromosome Registry
The rapid adaptations of genomic technologies into genetic testing require knowledge-based genetic databases and disease registries in various...
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A multicenter high-quality data registry for advanced proton therapy approaches: the POWER registry
BackgroundPaucity and low evidence-level data on proton therapy (PT) represent one of the main issues for the establishment of solid indications in...
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Clinical characteristics and outcomes in risk-stratified patients with smoldering multiple myeloma: data from the Czech Republic Registry of Monoclonal Gammopathies
Smoldering multiple myeloma (SMM) is an asymptomatic precursor to active multiple myeloma (MM). The aim of this study was to report clinical...
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Demographic and clinical characteristics associated with advanced stage colorectal cancer: a registry-based cohort study in Saudi Arabia
BackgroundIn Saudi Arabia, approximately one-third of colorectal cancer (CRC) patients are diagnosed at an advanced stage. Late diagnosis is often...
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Characterization of Nonfatal Opioid, Cocaine, Methamphetamine, and Polydrug Exposure and Clinical Presentations Reported to the Toxicology Investigators Consortium Core Registry, January 2010–December 2021
IntroductionTo characterize and compare opioid-only, cocaine-only, methamphetamine-only, opioid-and-cocaine exposure, and opioid-and-methamphetamine...
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Clinical outcome data of anxiety patients treated with cannabis-based medicinal products in the United Kingdom: a cohort study from the UK Medical Cannabis Registry
RationaleCannabis-based medicinal products (CBMPs) have been identified as novel therapeutics for generalised anxiety disorder (GAD) based on...
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AccessPD as a next generation registry to accelerate Parkinson’s disease research
Recruitment is a major rate-limiting factor in Parkinson’s disease (PD) research. AccessPD is a unique platform that aims to create a registry of...
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Beyond standard data collection – the promise and potential of BRAIN (Brain tumour Registry Australia INnovation and translation registry)
BackgroundReal-world data (RWD) is increasingly being embraced as an invaluable source of information to address clinical and policy-relevant...
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Consensus Recommendations for Clinical Outcome Assessments and Registry Development in Ataxias: Ataxia Global Initiative (AGI) Working Group Expert Guidance
To accelerate and facilitate clinical trials, the Ataxia Global Initiative (AGI) was established as a worldwide research platform for trial readiness...
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The Brain Gene Registry: a data snapshot
Monogenic disorders account for a large proportion of population-attributable risk for neurodevelopmental disabilities. However, the data necessary...
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Clinical Presentations, Treatments, and Outcomes of Non-native Snake Envenomations in the United States Reported in the North American Snakebite Registry
BackgroundNon-native snake envenomations in the United States are uncommon with much unknown about a patient’s presenting signs and symptoms....
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Registry-derived stage (RD-Stage) for capturing cancer stage at diagnosis for endometrial cancer
BackgroundCapture of cancer stage at diagnosis is important yet poorly reported by health services to population-based cancer registries. In this...
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Predicting ischemic stroke patients’ prognosis changes using machine learning in a nationwide stroke registry
Accurately predicting the prognosis of ischemic stroke patients after discharge is crucial for physicians to plan for long-term health care. Although...
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From Patient Registry to Multi-Center Research Consortium: the Toxicology Investigators Consortium (ToxIC) Turns Fifteen
The Toxicology Investigators Consortium (ToxIC) was launched as a prospective multi-center registry of cases who receive medical toxicology...
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Childhood glaucoma registry in Germany: initial database, clinical care and research (pilot study)
ObjectiveThe aim of this prospective pilot study is to establish an initial database to register patients diagnosed with different types of childhood...
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Challenges in collecting information on sexual orientation and gender identity for cancer patients: perspectives of hospital and central cancer registry abstractors
PurposeSexual and gender minority (SGM) populations experience cancer treatment and survival disparities; however, inconsistent sexual orientation...
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Validation of primary and outcome data quality in a Swedish population-based breast cancer quality registry
BackgroundPopulation-based cancer quality registries are of great importance for the improvement of cancer care. However, little is known about the...
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Clinical Features and Drug Retention of TNF Inhibitors in Older Patients with Ankylosing Spondylitis: Results from the KOBIO Registry
ObjectivesThis study aimed to analyse the clinical features and outcomes of and reasons for discontinuing tumour necrosis factor (TNF) inhibitor...
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Adult genitourinary sarcoma: analysis using hospital-based cancer registry data in Japan
BackgroundGenitourinary sarcomas are rare in adults and few large-scale studies on adult genitourinary sarcoma are reported. We aimed to elucidate...
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Monitoring of Adverse Events and Safety in Autoinflammatory Diseases: Real-Life Data from the Eurofever Registry
ObjectivesThe study is aimed to evaluate the impact of safety events in the Eurofever registry for Autoinflammatory diseases.
Methods ...