The International Niemann-Pick Disease Registry (INPDR) is a global rare disease registry that collects patient- and clinician-reported data on Niemann-Pick disease. By connecting researchers, clinicians and families worldwide, INPDR supports research, improves understanding of disease progression, and helps accelerate better care and future treatments.
International Niemann-Pick Disease Registry
Category
- Enabling infrastructure
Functions
- Patient and Public Involvement and Engagement (PPIE)
- Real world data collection
- Registry development
