Know Your Disease Landscape
Identify Registry Stakeholders
You can set your registry up for success by identifying stakeholders early in the registry development process. Involving these individuals can help ensure that you have brought together people who possess the necessary skills and expertise to create and manage a registry. Speaking with the different members of your community either online (e.g., through forums, social media, websites) or in person (e.g., through talks, conferences, events) can help you determine the current understanding of your disease. Determine the main objectives of each stakeholder and clearly define the expected contributions for each role.
Registry stakeholders may include the following:
- Patients and their families/caregivers, patient advocacy groups
- Academic researchers
- Healthcare professionals who specialize in your disease
- Professional societies
- Biopharmaceutical industry partners
- Government and/or regulatory agencies
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)