Coordination of Rare Diseases at Sanford
Status: Recruiting
Location: See all (2) locations...
Study Type: Observational
SUMMARY
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease
Locations
United States
South Dakota
Sanford Health
RECRUITING
Sioux Falls
Other Locations
Australia
Online Patient Enrollment System
RECRUITING
Sydney
Contact Information
Primary
CoRDS Team
cords@sanfordhealth.org
1-877-658-9192
Time Frame
Start Date: 2010-07
Estimated Completion Date: 2100-12
Participants
Target number of participants: 20000
Authors
Jill Weimer
Related Therapeutic Areas
Sponsors
Leads: Sanford Health
Collaborators: Kawasaki Disease Foundation Australia, CRMO Foundation, Smith-Kingsmore Syndrome Foundation, International WAGR Syndrome Association, Warburg Micro Research Foundation, Atypical Hemolytic Uremic Syndrome Foundation, Soft Bones Incorporated, KCNMA1 Channelopathy International Advocacy Foundation, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation, Klippel-Feil Syndrome Alliance, Klippel-Feil Syndrome Freedom, SMC1A Epilepsy Foundation, SHINE-Syndrome Foundaion, Batten Disease Support and Research Association, Mucolipidosis Type IV (ML4) Foundation, SPG Research Foundation, Hypertrophic Olivary Degeneration Association (HODA), The Maddi Foundation, MANDKind Foundation, FOD Support, Leiomyosarcoma Direct Research Foundation, All Things Kabuki, National Ataxia Foundation, Lowe Syndrome Association, International Association for Muscle Glycogen Storage Disease (IamGSD), Recurrent Meningitis Association, Hyperacusis Research Limited, Kabuki Syndrome Network, Hypnic Jerk-Sleep Myoclonus Support Group, Transient Global Amnesia Project, Cure Mucolipidosis, STAG1 Gene Foundation, Hypersomnia Foundation, Project Sebastian, HSAN1E Society, Remember the Girls, Zmynd11 Gene Disorder, Coffin Lowry Syndrome Foundation, SPATA Foundation, Scheuermann's Disease Fund, Global DARE Foundation, BARE Inc, Stickler Involved People, Life with LEMS Foundation, The Charlotte & Gwenyth Gray Foundation, Cauda Equina Foundation, Inc, International Sacral Agenesis/Caudal Regression Association (ISACRA), PROS Foundation, Jansen's Foundation, Kennedy's Disease Association, Breast Implant Victim Advocates, American Multiple Endocrine Neoplasia Support, The PBCers Organization, Myhre Syndrome Foundation, Cure Blau Syndrome Foundation, Cure Mito Foundation, Lambert Eaton (LEMS) Family Association, ARG1D Foundation, Curing Retinal Blindness Foundation, Alstrom United Kingdom, DNM1 Families, Team Telomere, TBX4Life, American Behcet's Disease Association, Riaan Research Initiative, International Foundation for Gastrointestinal Disorders, Aniridia North America, Recurrent Respiratory Papillomatosis Foundation, Cure VCP Disease,INC, Endosalpingiosis Foundation, Inc, Maple Syrup Urine Disease Family Support Group, People with Narcolepsy 4 People with Narcolepsy (PWN4PWN), 1p36 Deletion Support and Awareness, Cure DHDDS, Taylor's Tale Foundation, Team4Travis, Autoinflammatory Alliance, BLFS Incorporate, National Organization for Disorders of the Corpus Callosum (NODCC), Athymia, IMBS Alliance, Cockayne Syndrome Network (Share and Care), ML4 Foundation, CACNA1H Alliance, White Sutton Syndrome Foundation, The Alagille Syndrome Alliance, Kleine-Levin Syndrome Foundation, Cornelia de Lange Syndrome Foundation, The Malan Syndrome Foundation, The Cute Syndrome Foundation, Tango2 Research Foundation, Wiedemann-Steiner Syndrome Foundation, Krishnan Family Foundation, Marinesco-Sjogren Syndrome Support Group - NORD, 4p- Support Group, Cystinosis Research Foundation, Non- Ketotic Hyperglycinemia (NKH) Crusaders, Beyond Batten Disease Foundation, CURE HSPB8 Myopathy, Bohring-Opitz Syndrome Foundation, INC, International Society of Mannosidosis and Related Disorders, CureARS A NJ Nonprofit Corporation, Kawasaki Disease Foundation, Pitt Hopkins Research Foundation, Noah's Hope - Hope4Bridget Foundation