Coordination of Rare Diseases at Sanford
Status: Recruiting
Location: See all (2) locations...
Study Type: Observational [Patient Registry]
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: No
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: July 2010
Estimated Completion Date: December 2100
Participants
Target number of participants: 20000
Authors
Jeremy Morgan, Jill Weimer, Benjamin Forred
Related Therapeutic Areas
Sponsors
Collaborators: Soft Bones Incorporated, 1p36 Deletion Support and Awareness, CureARS A NJ Nonprofit Corporation, Klippel-Feil Syndrome Alliance, The Charlotte & Gwenyth Gray Foundation, KCNMA1 Channelopathy International Advocacy Foundation, Hypertrophic Olivary Degeneration Association (HODA), Atypical Hemolytic Uremic Syndrome Foundation, Global DARE Foundation, Noah's Hope - Hope4Bridget Foundation, Athymia, Alstrom United Kingdom, Life with LEMS Foundation, American Multiple Endocrine Neoplasia Support, Zmynd11 Gene Disorder, International Sacral Agenesis/Caudal Regression Association (ISACRA), SMC1A Epilepsy Foundation, Cystinosis Research Foundation, Klippel-Feil Syndrome Freedom, White Sutton Syndrome Foundation, The Alagille Syndrome Alliance, International Association for Muscle Glycogen Storage Disease (IamGSD), National Ataxia Foundation, PROS Foundation, Pitt Hopkins Research Foundation, Autoinflammatory Alliance, Hypnic Jerk-Sleep Myoclonus Support Group, Remember the Girls, Mucolipidosis Type IV (ML4) Foundation, Tango2 Research Foundation, Cure Mito Foundation, Kleine-Levin Syndrome Foundation, Endosalpingiosis Foundation, Inc, Lowe Syndrome Association, Kabuki Syndrome Network, Curing Retinal Blindness Foundation, Transient Global Amnesia Project, Non- Ketotic Hyperglycinemia (NKH) Crusaders, National Organization for Disorders of the Corpus Callosum (NODCC), The Cute Syndrome Foundation, 4p- Support Group, The Malan Syndrome Foundation, American Behcet's Disease Association, Project Sebastian, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation, Maple Syrup Urine Disease Family Support Group, Hyperacusis Research Limited, Cockayne Syndrome Network (Share and Care), SHINE-Syndrome Foundaion, Beyond Batten Disease Foundation, FOD Support, Wiedemann-Steiner Syndrome Foundation, Leiomyosarcoma Direct Research Foundation, Cauda Equina Foundation, Inc, Kawasaki Disease Foundation, Stickler Involved People, Kawasaki Disease Foundation Australia, Marinesco-Sjogren Syndrome Support Group - NORD, Recurrent Meningitis Association, People with Narcolepsy 4 People with Narcolepsy (PWN4PWN), Scheuermann's Disease Fund, Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc, Bohring-Opitz Syndrome Foundation, INC, Smith-Kingsmore Syndrome Foundation, DNM1 Families, Breast Implant Victim Advocates, Team Telomere, ML4 Foundation, Cornelia de Lange Syndrome Foundation, Kennedy's Disease Association, International WAGR Syndrome Association, CRMO Foundation, Cure Mucolipidosis, CACNA1H Alliance, Cure VCP Disease,INC, SPG Research Foundation, The PBCers Organization, Hypersomnia Foundation, International Foundation for Gastrointestinal Disorders, Jansen's Foundation, Riaan Research Initiative, Myhre Syndrome Foundation, Recurrent Respiratory Papillomatosis Foundation, Warburg Micro Research Foundation, All Things Kabuki, The Maddi Foundation, IMBS Alliance, Batten Disease Support and Research Association, HSAN1E Society
Leads: Sanford Health