NIH Clinical Research Trials and You
List of Registries
What is a registry?
A registry is a place to store detailed information about people with a specific disease or condition, who provide it on a voluntary basis. Registries can provide health care professionals and researchers with first-hand information about individuals with these conditions, both individually and as a group. Sometimes, the information can be de-identified to protect the participants’ privacy. With their permission, registries may also be used to identify individuals who are eligible to participate in research studies.
How is a registry different from a clinical trial?
A registry is a voluntary collection of information about individuals with certain diseases or conditions. A clinical trial is a research study in which some individuals receive an experimental intervention, and are compared to other individuals with the same condition who receive the standard intervention or no intervention; the results are used to evaluate the relative effects of the interventions on health-related outcomes. Individuals can choose to provide information to a registry even if they are not interested in participating in a clinical trial.
List of Registries
This website lists those registries that are active and directly NIH-funded.
- Breast Cancer Surveillance Consortium
- Breast Family Cancer Family Registry
- Bronchiectasis Research Registry
- Cancer Genetics Network
- Clinical Trials Public Data Share Website
- Colon Family Cancer Family Registry
- Consoritum for the Longitudinal Evaluation of African-Americans with Early Rheumatoid Arthritis
- Descriptive Epidemiology of Osteogenic Sarcoma via Population-Based Registries
- DNA Registry for Diseases
- DS-Connect: the NIH Down Syndrome Consortium Registry
- eyeGENE®: The National Ophthalmic Disease Genotyping and Phenotyping Network
- Genetic Testing Registry (GTR)
- Global Rare Diseases (Patient) Registry and Data Repository (GRDR)
- Inherited bone marrow failure syndrome
- International Bone Marrow Transplant Registry Database
- International Sjogren’s Syndrome Registry, or SICCA (closed to new participants)
- Lupus Family Registry and Repository
- National Addiction & HIV Data Archive Program
- National Alopecia Areata Registry
- National and State Cancer Registries
- National Marrow Donor Program (NMDP)
- NIDA Center for Genetics Research
- NIH Human Embryonic Stem Cell Registry
- NIH National Registry of U.S. Myotonic Dystrophy and U.S. Facioscapulohumeral Muscular Dystrophy (FSHD)
- Pediatric Imaging, Neurocognition, and Genetics (PING)
- Population Studies of Hematologic Tumors using Scandinavian Registries
- Research Registry for Neonatal Lupus
- Sample Collection Registry
- SEER registries
- United States Immunodeficiency Network (USIDNET) National Registry for Patients with Primary Immunodeficiency Diseases