Learn About Registries

Overview

A registry is a database that collects and stores information about a group of individuals, most of whom are living with the same disease. Registries are a powerful tool for focusing research on a specific disease. One challenge of advancing the scientific understanding of rare diseases is finding enough people who eligible to participate in research studies. Establishing a registry can help tackle that challenge.

Resources

Learn What Is a Registry

Chapter 20: Rare Disease Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 3rd Edition Agency for Healthcare Research Quality (AHRQ) (link)

Frequently Asked Questions - Registries NIH Clinical Research Trials and You (link)

Rare Disease Registries: Advancing Disease Understanding, Treatments, and Cures Global Genes (link)

Know What Information to Collect

Expanding the Science of Patient Input: Building Smarter Patient Registries FasterCures (link)

Check Whether a Registry Exists

ClinicalTrials.gov National Library of Medicine (NLM) (link)

Rare Disease Patient Registry Coordinators

RD-Connect Registry & Biobank Finder

Genetic and Rare Diseases Information Center (GARD) National Center for Advancing Translational Sciences (NCATS) (link)

Orphanet: Registries & Biobanks Orphanet (link)