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List of Registries
Frequently Asked Questions
What is a registry?
A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Many registries collect information about people who have a specific disease or condition, while others seek participants of varying health status who may be willing to participate in research about a particular disease. Individuals provide information about themselves to these registries on a voluntary basis. Registries can be sponsored by a government agency, nonprofit organization, health care facility, or private company. It’s always good to check first to know who sponsors the registry – or – look for information on a registry’s site to know about their sponsor(s).
Why are registries needed?
Registries can provide health care professionals and researchers with first-hand information about people with certain conditions, both individually and as a group, and over time, to increase our understanding of that condition. Some registries collect information that can be used to track trends about the number of people with diseases, treatments, and more. Other registries invite people to sign up to be contacted about participating in clinical research. These ask very basic questions about health history that would help determine whether someone is possibly eligible to join a research study.
It sounds like these registries collect personal health information. Is there a risk that such information could be disclosed?
Government agencies have strict privacy requirements set by law such as the Federal Information Security Management Act (FISMA), and the Health Insurance Portability and Accountability Act (HIPAA). If registries have followed all of these rules, the likelihood of identifiable personal information being shared is very small.
What benefits will someone receive from participating in a registry?
Participation in a registry is likely to increase what we know about a specific condition, help health care professionals improve treatment, and allow researchers to design better studies on a particular condition, including development and testing of new treatments. Being part of a clinical trials registry can help people interested in participating in research connect with clinical investigators. However, individuals (and their families) who choose to participate in a registry should understand that participation will not guarantee a treatment or cure for their condition or that they will be eligible to join a study.
Who has access to the information in a registry?
Usually, a federally-funded registry has a very limited list of individuals (registry coordinator) who may have access to participants’ personal, identifying information. ;Those individuals must be specially trained and certified regarding information security requirements.
Who owns the data from a registry? Who makes decisions about how these data will be used?
The data collected in a disease registry is stripped of personal information. It belongs to the sponsor of the registry, and depending on how the registry is set up, may be shared with the participants and their families, and approved health care professionals and researchers. However, personal, identifying information is kept private. Usually, a registry has a governing committee that makes decisions about how the data can be used or shared.
Can a participant withdraw from the registry?
Yes. Registries are free and voluntary; there is no penalty for choosing to withdraw at any point.
Who should the participant contact with additional questions or concerns?
For any questions about participation or any issues that may arise, registries provide a contact, usually the registry coordinator.
How is a registry different from a clinical trial?
Registries focused on specific diseases or conditions collect information voluntarily from people with those conditions. Clinical trials registries collect basic health information from people who agree to be contacted about participating in future clinical trials or studies.
A clinical trial is the study of new ways to prevent, detect or treat diseases or conditions. Volunteering for a registry does not mean a person has signed up for a clinical trial. Participation in a disease registry can sometimes become a first step toward participation in a clinical trial, but registries and specific trials are not directly linked.
List of Registries
Disclaimer: The following listing is not intended to be comprehensive, and the inclusion of any particular organization on this list does not imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information about registry efforts at the national level and therefore have not included many local groups that can offer valuable assistance to individuals, their families within a limited geographic area.
- Alzheimer’s Prevention Registry
- Breast and Colon Cancer Family Registries
- Breast Cancer Surveillance Consortium
- Breast Cancer Family Registry
- Cancer Genetics Network
- The Cerebral Palsy Research Network
- Cerebral Palsy Research Registry (CPRR)
- Clinical Trials Public Data Share Website
- Collaborative Islet Transplant Registry
- Colon Cancer Family Registry
- Congenital Muscle Disease International Registry (CMDIR)
- Consoritum for the Longitudinal Evaluation of African-Americans with Early Rheumatoid Arthritis
- Development of a National Incompatible Kidney Transplant Registry
- Development of a Pediatric Myelodysplastic Syndrome Patient Registry
- Development of an Infertility Family Registry (IFRR)
- Disorders of Sex Development Network Patient Registry
- Dominantly Inherited Alzheimer Network (DIAN) — Expanded Registry
- Drug Inducted Liver Injury Network (DILIN)
- DS-Connect™: The Down Syndrome Registry
- Dyskeratosis Congenita and Telomere Biology Disorders
- The Environmental Polymorphisms Registry (EPR) — Using DNA to Study Disease
- eyeGENE®: The National Ophthalmic Disease Genotyping and Phenotyping Network
- Fecal Microbiota Transplant National Registry
- Foundation for Sarcoidosis Patient Registry
- Global Rare Diseases (Patient) Registry and Data Repository (GRDR)
- Inherited bone marrow failure syndrome
- Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS)
- International Registry of Werner Syndrome
- International Sjogren’s Syndrome Registry, or SICCA (closed to new participants)
- Lupus Family Registry and Repository
- Myasthenia Gravis Patient Registry
- National Addiction & HIV Data Archive Program
- National Alopecia Areata Registry
- National ALS Registry
- National and State Cancer Registries
- National Marrow Donor Program (NMDP)
- National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC)
- NIDA Center for Genetics Research
- NIDCD National Temporal Bone, Hearing & Balance Pathology Resource Registry
- 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)
- PKU Patient Registry
- PregSource®: Crowdsourcing to Understand Pregnancy
- The Preeclampsia Registry
- Rare Diseases Clinical Research Network Consortium of Eosinophilic Gastrointestinal Disease Researchers Contact Registry
- Research Registry for Neonatal Lupus
- Sample Collection Registry
- SEER registries
- Severe Chronic Neutropenia International Registry
- Shwachman-Diamond Syndrome International Registry and Repository
- Usher Syndrome Registry
- USIDNET Registry for Patients with Primary Immunodeficiency Diseases
This page last reviewed on March 27, 2018