WHY IS THERE NOT A MULTIPLE SCLEROSIS DISEASE REGISTRY ON THIS LIST?
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
- 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
- Foundation for Sarcoidosis Patient Registry
- GenomeConnect
- Global Rare Diseases (Patient) Registry and Data Repository (GRDR)
- Inherited bone marrow failure syndrome
- Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS)
- International Bone Marrow Transplant Registry Database
- 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)
- 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
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