Rare Diseases Clinical Research Network

E421896

The Rare Diseases Clinical Research Network is a collaborative NIH-funded consortium that conducts clinical studies, develops diagnostics and treatments, and advances knowledge for patients affected by rare diseases.

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Rare Diseases Clinical Research Network canonical 1

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Statements (47)

Predicate Object
instanceOf clinical research consortium
research network
collaboratesWith academic medical centers
international rare disease researchers
patient advocacy groups
country United States of America
surface form: United States
dataType clinical data
genetic data
patient-reported outcomes
disseminates research findings on rare diseases
encourages multidisciplinary collaboration
patient engagement in research
establishedBy National Institutes of Health NERFINISHED
field clinical research
rare diseases
translational research
focus biomarker discovery for rare diseases
clinical trials for rare diseases
natural history studies of rare diseases
outcome measures for rare diseases
patient-centered research
fundedBy National Center for Advancing Translational Sciences NERFINISHED
National Institutes of Health ONNED1
Office of Rare Diseases Research NERFINISHED
geographicScope international collaborations
national
hasPart multiple disease-specific consortia
hasWebsite https://www.rarediseasesnetwork.org
language English
monitors clinical outcomes in rare disease patients
objective improve diagnosis of rare diseases
improve quality of life for people with rare diseases
improve treatment of rare diseases
operatedBy National Center for Advancing Translational Sciences Office of Rare Diseases Research NERFINISHED
purpose advance knowledge about rare diseases
conduct clinical studies on rare diseases
develop diagnostics for rare diseases
develop treatments for rare diseases
sponsor multicenter clinical studies
supports data sharing among investigators
standardized protocols for rare disease research
training of investigators in rare disease research
targetPopulation patients with rare diseases
typeOfProject NIH cooperative research program
uses biospecimen repositories
longitudinal cohort designs
patient registries

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Office of Rare Diseases Research supportsProgram Rare Diseases Clinical Research Network