Retinitis Pigmentosa Clinical Trial
— CoRDSOfficial title:
Coordination of Rare Diseases at Sanford
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.
Status | Recruiting |
Enrollment | 20000 |
Est. completion date | December 2100 |
Est. primary completion date | December 2100 |
Accepts healthy volunteers | No |
Gender | All |
Age group | N/A and older |
Eligibility | Inclusion Criteria: - Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease Exclusion Criteria: - Diagnosis of a disease which is not rare |
Country | Name | City | State |
---|---|---|---|
Australia | Online Patient Enrollment System | Sydney | |
United States | Sanford Health | Sioux Falls | South Dakota |
Lead Sponsor | Collaborator |
---|---|
Sanford Health | 1p36 Deletion Support and Awareness, 4p- Support Group, All Things Kabuki, Alstrom United Kingdom, American Behcet's Disease Association, American Multiple Endocrine Neoplasia Support, Aniridia North America, ARG1D Foundation, Athymia, Atypical Hemolytic Uremic Syndrome Foundation, Autoinflammatory Alliance, BARE Inc, Batten Disease Support and Research Association, Beyond Batten Disease Foundation, BLFS Incorporate, Bohring-Opitz Syndrome Foundation, INC, Breast Implant Victim Advocates, CACNA1H Alliance, Cauda Equina Foundation, Inc, Cockayne Syndrome Network (Share and Care), Coffin Lowry Syndrome Foundation, Cornelia de Lange Syndrome Foundation, CRMO Foundation, Cure Blau Syndrome Foundation, Cure DHDDS, CURE HSPB8 Myopathy, Cure Mito Foundation, Cure Mucolipidosis, Cure VCP Disease,INC, CureARS A NJ Nonprofit Corporation, Curing Retinal Blindness Foundation, Cystinosis Research Foundation, DNM1 Families, Endosalpingiosis Foundation, Inc, FOD Support, Global DARE Foundation, HSAN1E Society, Hyperacusis Research Limited, Hypersomnia Foundation, Hypertrophic Olivary Degeneration Association (HODA), Hypnic Jerk-Sleep Myoclonus Support Group, IMBS Alliance, International Association for Muscle Glycogen Storage Disease (IamGSD), International Foundation for Gastrointestinal Disorders, International Sacral Agenesis/Caudal Regression Association (ISACRA), International Society of Mannosidosis and Related Disorders, International WAGR Syndrome Association, Jansen's Foundation, Kabuki Syndrome Network, Kawasaki Disease Foundation, Kawasaki Disease Foundation Australia, KCNMA1 Channelopathy International Advocacy Foundation, Kennedy's Disease Association, Kleine-Levin Syndrome Foundation, Klippel-Feil Syndrome Alliance, Klippel-Feil Syndrome Freedom, Krishnan Family Foundation, Lambert Eaton (LEMS) Family Association, Leiomyosarcoma Direct Research Foundation, Life with LEMS Foundation, Lowe Syndrome Association, MANDKind Foundation, Maple Syrup Urine Disease Family Support Group, Marinesco-Sjogren Syndrome Support Group - NORD, ML4 Foundation, Mucolipidosis Type IV (ML4) Foundation, Myhre Syndrome Foundation, National Ataxia Foundation, National Organization for Disorders of the Corpus Callosum (NODCC), Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation, Noah's Hope - Hope4Bridget Foundation, Non- Ketotic Hyperglycinemia (NKH) Crusaders, People with Narcolepsy 4 People with Narcolepsy (PWN4PWN), Pitt Hopkins Research Foundation, Project Sebastian, PROS Foundation, Recurrent Meningitis Association, Recurrent Respiratory Papillomatosis Foundation, Remember the Girls, Riaan Research Initiative, Scheuermann's Disease Fund, SHINE-Syndrome Foundaion, SMC1A Epilepsy Foundation, Smith-Kingsmore Syndrome Foundation, Soft Bones Incorporated, SPATA Foundation, SPG Research Foundation, STAG1 Gene Foundation, Stickler Involved People, Tango2 Research Foundation, Taylor's Tale Foundation, TBX4Life, Team Telomere, Team4Travis, The Alagille Syndrome Alliance, The Charlotte & Gwenyth Gray Foundation, The Cute Syndrome Foundation, The Maddi Foundation, The Malan Syndrome Foundation, The PBCers Organization, Transient Global Amnesia Project, Warburg Micro Research Foundation, White Sutton Syndrome Foundation, Wiedemann-Steiner Syndrome Foundation, Zmynd11 Gene Disorder |
United States, Australia,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | To accelerate research into rare disorders by connecting individuals who are interested in research and who have been diagnosed with a rare disorder (or a disorder of unknown prevalence, or who are undiagnosed) with researchers who study rare diseases. | 100 years |
Status | Clinical Trial | Phase | |
---|---|---|---|
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