Know Your Disease Landscape
Determine What Research is Being Done
Knowing what research is underway will provide insight into what is known about your disease and the current focus of researchers.
As you search the resources below, try to find out:
- What is being studied?
- Who is doing the research?
- Where are these researchers located?
Explore these online resources:
- ClinicalTrials.gov is a database of privately and publicly funded clinical studies carried out worldwide. It is a resource of the U.S. National Library of Medicine (NLM) at the National Institutes of Health (NIH). Read the “For Patients and Families ” page to learn more.
- 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.
- ResearchMatch is an online tool created by academic institutions across the United States to assist people in finding research studies.
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)