Promote Your Registry
The strategy for reaching your target audience will depend on your registry’s rare disease and on the status of the research focused on this disease.
To find academic and commercial researchers:
- Review biomedical company portfolios to learn about their focus areas.
- Attend conferences and meetings that target rare diseases in general or your specific rare disease in particular.
- Partner with related rare disease organizations.
- Explore these online resources:
- PubMed: A free search engine that primarily accesses the MEDLINE database of references and abstracts on life sciences and biomedical topics; the United States National Library of Medicine at the National Institutes of Health (NIH) maintains the database.
- ClinicalTrials.gov : The largest clinical trials database holding registrations from more than 230,000 trials from 195 countries; it is managed by the United States National Library of Medicine at NIH.
- NIH RePORTer: Research Portfolio Online Reporting Tools provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH supported research.
- GARD Guide – How to Find a Disease Specialist: The Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences (NCATS), provides tips for finding researchers and healthcare professionals with expertise in a particular rare disease.