To ensure patient involvement and community engagement throughout the research process, institutions must collaborate with community organizations and patient groups to identify and understand public health needs.
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Research
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Patient/Community Engagement & Health Information
Rare Disease Day at NIH 2023: Putting Hope Into Action
Stories from people with rare diseases were at the forefront of Rare Disease Day at NIH 2023, along with sessions about the importance of diversity, equity and inclusion in research; the role of advocacy groups and industry collaborations; and more.
The Public Health Challenge of Rare Diseases
In an NIH Director’s Blog guest post, NCATS Director Joni Rutter, Ph.D., discusses the public health challenge of rare diseases and how NCATS is working to bring more treatments to people with rare diseases faster.
The Economic Burden of Rare Diseases at $1 Trillion
NCATS Director Joni L. Rutter, Ph.D., co-authored an article that summarizes recent studies and reports on the estimated $1 trillion collective cost burden posed by rare diseases in the U.S. Experts recommend steps to address gaps and challenges.
Genetic & Rare DiseasesThe Genetic and Rare Diseases Information Center provides up-to-date health information about numerous rare and genetic diseases.
Patient-Focused Therapy DevelopmentThe NCATS Toolkit for Patient-Focused Therapy Development is a collection of online resources that can help patient groups advance through the process of therapy development.
Rare Diseases Registry ProgramThe Rare Diseases Registry Program (RaDar) is an online resource that provides patient groups with guidance on how to develop registries for rare diseases.
Rare Diseases Community ResourcesLearn about rare diseases and help increase awareness with these shareable resources, social media messages and graphics from NCATS.
The Genetic and Rare Diseases Information Center provides up-to-date health information about numerous rare and genetic diseases.
Patient-Focused Therapy Development
The NCATS Toolkit for Patient-Focused Therapy Development is a collection of online resources that can help patient groups advance through the process of therapy development.
Rare Diseases Registry Program
The Rare Diseases Registry Program (RaDar) is an online resource that provides patient groups with guidance on how to develop registries for rare diseases.
Rare Diseases Community Resources
Learn about rare diseases and help increase awareness with these shareable resources, social media messages and graphics from NCATS.
Have a Rare Disease?
The Genetic and Rare Diseases Information Center (GARD) offers credible, up-to-date health information for many rare diseases.
Undiagnosed Diseases Network
The Undiagnosed Diseases Network (UDN), led by the NIH Common Fund, seeks to provide answers and advance medical knowledge about rare and common diseases. Clinicians and researchers from across the United States are involved in the UDN. Learn more about the UDN and see opportunities to get involved.
Principles of Community Engagement
This comprehensive guide, available in English and Spanish (PDF - 3.29MB), outlines core principles for engaging diverse communities in clinical research activities.
Interested in Clinical Trials at NIH?
Patient involvement in clinical research helps investigators uncover better ways to treat, prevent, diagnose and understand human diseases. Visit ClinicalTrials.gov for information about clinical studies at NIH and other institutions that are currently enrolling patients.
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