NORD-FDA Natural History Study Project Page
NORD is partnering with disease specific advocacy organizations to launch patient-centered registries to gain a better understanding of rare diseases. The registries will allow patients around the world to share relevant data, connect with researchers, and support research on how variables such as diet, exercise, environmental factors and other variables may affect disease progression.
Source: https://rarediseases.org/for-patient-organizations/ways-partner/patient-registries/
Goals
Praise for NORD’s Patient Registries
FDA Senior Official says NORD’s platform is “an exciting new tool researchers are using to study rare diseases.” Read the blog here >
BioCentury writes article Charting Rare Stars: How NORD is putting patients in control of rare disease natural history studies. Read the article here >