Know Your Disease Landscape
Overview
Finding out what is known about your disease will assist you in setting your registry goals and creating a plan to build relationships with researchers. For most of the almost 7,000 identified rare diseases, scientists know very little. To build a successful registry, you’ll need to learn what is known about your rare disease, determine what research is already being done, and identify your registry stakeholders.
Resources
Learn What is Known About Your Disease
Genetic and Rare Diseases Information Center (GARD)
National Center for Advancing Translational Sciences (NCATS) (link)
Orphanet: Registries & Biobanks
Orphanet (link)
GeneReviews
National Library of Medicine (NLM) (link)
Determine What Research is Being Done
ClinicalTrials.gov
National Library of Medicine (NLM) (link)
Research Portfolio Online Reporting Tool (RePORTER)
National Institutes of Health (NIH) (link)
ResearchMatch
About ResearchMatch (link)