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Patient Registries

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.

Patient Registries

What is a registry?

A place where data, records, or laboratory samples are kept and usually are made available for research or comparative study


The goal of the registries is to document natural history data to help medical researchers better understand how diseases develop and progress over time. The databanks utilize best practices from NIH, expertise from medical professionals in the specific disease state and insight from the FDA on questionnaire design to help future development of promising therapies.


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 >


What partners are saying

“It will provide a safe platform for patients and researchers to connect and confidentially exchange data in order to accelerate treatments and a cure,” VHL Databank partner Ilene Sussman, Executive Director of the VHL Alliance.

Contact us if you'd like to learn more about NORD's registry platform and receive a demo