Learn About Registries

Check Whether a Registry Exists

Before starting your own registry, determine whether a registry already exists for your disease. Having only one registry fosters collaborations and prevents fracturing within a rare disease community, allows for the pooling of resources, reduces duplication of efforts, and avoids sources of competition. The population of individuals who are affected by a rare disease may be very small, and you don’t want to create competition for registry participants.

To find out whether your rare disease already has a registry search the internet, reach out to existing patient groups for that disease, and contact rare diseases umbrella organizations like the EveryLife Foundation for Rare Diseases , Global Genes, Genetic Alliance, and the National Organization for Rare Disorders (NORD) .

Tips for checking to see if a registry exists for your disease include the following:

  • Search ClinicalTrials.gov by using the term “registry” and the name of your rare disease. ClinicalTrials.gov is maintained by the U.S. National Library of Medicine of the National Institutes of Health.
  • Reach out to the Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences (NCATS). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
  • Perform a general internet search using the disease name and the term “registry.”
  • Check with patient advocacy groups for the disease, which can be found by searching websites such as the Genetic and Rare Diseases (GARD) Information Center, or Disease Info Search.
  • Search the RD-Connect Registry & Biobank Finder , an online global directory of existing rare disease databases, registries and biobanks. The RD-Connect Registry & Biobank Finder lets researchers locate rare disease patient registries and biobanks that store data on specific rare diseases.
  • Search Orphanet: Registries and Biobanks to find registries and biobanks throughout the world. Orphanet was established in France and gradually grown to a consortium of 40 countries, within Europe and across the globe.
  • Identify disease-specific and general patient registries using social media groups such as Rare Disease Patient Registry Coordinators .

If you discover a registry already exists for your rare disease, you will need to learn more about the existing registry.

  • What are the goals of the existing registry?
    • Will your registry have a different set of goals?
  • Who owns the registry and the data within the registry? Is it being shared openly?
  • How large is the existing registry? (i.e., does it already contain a significant part of the population, or only one or two families?)
  • Could you collaborate with the existing registry/registries? Joining forces is better than competing. Consider the possibility of creating a registry network.