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RSNA-ACR 3D Printing Registry
The RSNA-ACR 3D printing registry enables systematic collection of data about clinical 3D printing performed by medical centers or at the point of...
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The Australian Trauma Registry (ATR): a leading clinical quality registry
Operating since 2012 under the auspices of the Australian Trauma Quality Improvement Program (AusTQIP), the Australian Trauma Registry (ATR) has...
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The establishment of a multiple myeloma clinical registry in the Asia–Pacific region: The Asia–Pacific Myeloma and Related Diseases Registry (APAC MRDR)
BackgroundMultiple myeloma (MM) is the second most common haematological cancer worldwide. Along with related diseases including monoclonal...
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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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The need for a new keyword — “Trial registry-metaresearch” — to track certain uses of clinical trial registry records
Public clinical trial registries contain a large amount of information about a large number of trials. Academic researchers have conducted various...
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Overcoming challenges in rare disease registry integration using the semantic web - a clinical research perspective
The growing number of disease-specific patient registries for rare diseases has highlighted the need for registry interoperability and data linkage,...
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Clinical characteristics of sarcoma patients: a population-based data analysis from a German clinical cancer registry
PurposeSarcomas are a heterogeneous group of malignant neoplasms with a wide range of histological types and occur in almost any anatomic site and...
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Clinical Characteristics of Registry Participants with Psoriatic Arthritis Initiating Guselkumab: An Analysis from the CorEvitas Psoriatic Arthritis/Spondyloarthritis Registry
BackgroundThe monoclonal antibody guselkumab is the first selective inhibitor of the interleukin-23 p19 subunit approved to treat adults with...
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The International X-Linked Hypophosphatemia (XLH) Registry: first interim analysis of baseline demographic, genetic and clinical data
BackgroundX-linked hypophosphatemia (XLH) is a rare, hereditary, progressive, renal phosphate-wasting disorder characterized by a pathological...
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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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Use of coronary physiology to guide revascularization in clinical practice: results of the F(FR)2 registry
BackgroundDespite the recommendation of coronary physiology to guide revascularization in angiographically intermediate stenoses without established...
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Protocol for the nationwide registry of patients with polycystic kidney disease: japanese national registry of PKD (JRP)
BackgroundAutosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD) are major genetic polycystic...
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Methodological advances in patient-centered rare disease research: the UTHealth Houston Turner Syndrome Society of the United States research registry
BackgroundMany different clinical specialists provide care to patients with Turner syndrome (TS), who have highly variable clinical manifestations....
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EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
BackgroundThe EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three...
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Classification of long-term clinical course of Parkinson’s disease using clustering algorithms on social support registry database
Although Parkinson’s disease (PD) has a heterogeneous disease course, it remains challenging to establish subtypes. We described and clustered the...
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Pursuing Clinical Predictors and Biomarkers for Progression in ILD: Analysis of the Pulmonary Fibrosis Foundation (PFF) Registry
IntroductionPulmonary fibrosis is a characteristic of various interstitial lung diseases (ILDs) with differing etiologies. Clinical trials in...
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The LiverMetSurvey Registry
LiverMetSurvey is an international registry aiming to prospectively collect data from patients who underwent surgical treatment of colorectal liver...
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The impact of antifibrotic use on long-term clinical outcomes in the pulmonary fibrosis foundation registry
BackgroundIdiopathic pulmonary fibrosis (IPF) is a devastating interstitial lung disease (ILD) with a high mortality rate. The antifibrotic...
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Demographics and treatment of patients with primary nephrotic syndrome in Japan using a national registry of clinical personal records
The nationwide clinical features of Japanese patients with primary nephrotic syndrome (NS), including minimal change disease (MCD), focal segmental...
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Clinical and genetic characterization of patients with eye diseases included in the Spanish Rare Diseases Patient Registry
BackgroundThe low prevalence of rare diseases poses a significant challenge in advancing their understanding. This study aims to delineate the...
