Rare Diseases Registry Program

E421898

The Rare Diseases Registry Program is an initiative that helps develop and maintain patient registries to advance research, understanding, and treatment of rare diseases.

All labels observed (1)

Label Occurrences
Rare Diseases Registry Program canonical 1

How this entity was disambiguated

Statements (30)

Predicate Object
instanceOf health research initiative ⓘ
patient registry support program ⓘ
aimsTo enable natural history studies of rare diseases ⓘ
enhance collaboration among rare disease researchers ⓘ
facilitate clinical research in rare diseases ⓘ
improve data quality in rare disease research ⓘ
promote standardized data collection for rare diseases ⓘ
support clinical trial readiness for rare diseases ⓘ
contributesTo epidemiological knowledge of rare diseases ⓘ
evidence base for rare disease treatments ⓘ
identification of clinical outcomes in rare diseases ⓘ
identification of unmet needs in rare disease care ⓘ
focusesOn rare diseases ⓘ
hasOutcome better characterization of rare disease populations ⓘ
enhanced monitoring of treatment effectiveness in rare diseases ⓘ
improved ability to design rare disease clinical trials ⓘ
hasPurpose advance research on rare diseases ⓘ
improve understanding of rare diseases ⓘ
support development of treatments for rare diseases ⓘ
supportsActivity data collection on rare disease patients ⓘ
development of patient registries ⓘ
longitudinal follow-up of rare disease patients ⓘ
maintenance of patient registries ⓘ
supportsStakeholder clinicians ⓘ
patient advocacy groups ⓘ
patients with rare diseases ⓘ
researchers ⓘ
usesMethod database management ⓘ
patient registries ⓘ
systematic data collection ⓘ

How these facts were elicited

Referenced by (1)

Full triples — surface form annotated when it differs from this entity's canonical label.

Office of Rare Diseases Research → supportsProgram → Rare Diseases Registry Program ⓘ