Coordination of Rare Diseases at Sanford
Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY
The Coordination of Rare Diseases at Sanford (CoRDS) is an international patient registry that serves as a centralized resource for rare disease research. Individuals affected by rare diseases, undiagnosed conditions, and disorders of unknown prevalence may voluntarily contribute health information to support natural history studies, participant recruitment, and other research efforts. Through partnerships with patient advocacy organizations and researchers worldwide, CoRDS helps connect rare disease communities with research opportunities while advancing knowledge across more than 7,000 rare diseases. Participation is free of charge.
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
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, International WAGR Syndrome Association, Atypical Hemolytic Uremic Syndrome Foundation, Soft Bones Incorporated, Klippel-Feil Syndrome Alliance, WWOX Foundation, Batten Disease Support and Research Association, The Maddi Foundation, MANDKind Foundation, Leiomyosarcoma Direct Research Foundation, National Ataxia Foundation, SMC1A DEE Foundation, The Foundation for Casey's Cure, GNB1 Advocacy Group, STAG1 Gene Foundation, Remember the Girls, Zmynd11 Gene Disorder, Coffin Lowry Syndrome Foundation, Moyamoya Foundation, MLD Foundation, Stickler Involved People, Cauda Equina Foundation, Inc, Kennedy's Disease Association, Breast Implant Victim Advocates, American Multiple Endocrine Neoplasia Support, Hope for PDCD Foundation, Cure Mito Foundation, ARG1D Foundation, Alstrom United Kingdom, Team Telomere, TBX4Life, International Foundation for Gastrointestinal Disorders, Riaan Research Initiative, Aniridia North America, Recurrent Respiratory Papillomatosis Foundation, Maple Syrup Urine Disease Family Support Group, Cure DHDDS, Autoinflammatory Alliance, National Organization for Disorders of the Corpus Callosum (NODCC), Athymia, IMBS Alliance, Cockayne Syndrome Network (Share and Care), CACNA1H Alliance, The Alagille Syndrome Alliance, The LCC Foundation, Tango2 Research Foundation, Wiedemann-Steiner Syndrome Foundation, Marinesco-Sjogren Syndrome Support Group - NORD, 4p- Support Group, Cystinosis Research Foundation, Non- Ketotic Hyperglycinemia (NKH) Crusaders, Beyond Batten Disease Foundation, Bohring-Opitz Syndrome Foundation, INC, CURE HSPB8 Myopathy, Pitt Hopkins Research Foundation, Noah's Hope - Hope4Bridget Foundation, Smith-Kingsmore Syndrome Foundation, Warburg Micro Research Foundation, ANA-Aniridia North America, KCNMA1 Channelopathy International Advocacy Foundation, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation, TUBB3 Foundation, Klippel-Feil Syndrome Freedom, SHINE-Syndrome Foundaion, Mucolipidosis Type IV (ML4) Foundation, SPG Research Foundation, Hypertrophic Olivary Degeneration Association (HODA), CRELD1 Warriors, FOD Support, KBG Syndrome Association, All Things Kabuki, Lowe Syndrome Association, International Association for Muscle Glycogen Storage Disease (IamGSD), Recurrent Meningitis Association, ACTA2 Alliance, Hyperacusis Research Limited, Kabuki Syndrome Network, Hypnic Jerk-Sleep Myoclonus Support Group, Transient Global Amnesia Project, Cure Mucolipidosis, Hypersomnia Foundation, HSAN1E Society, Project Sebastian, ISMRD - Beta Mannosidosis, Scheuermann's Disease Fund, Global DARE Foundation, MSA United Research Consortium, SPATA Foundation, BARE Inc, Life with LEMS Foundation, The Charlotte & Gwenyth Gray Foundation, International Sacral Agenesis/Caudal Regression Association (ISACRA), PROS Foundation, Jansen's Foundation, Acrodysostosis Support and Research, The PBCers Organization, Myhre Syndrome Foundation, Cure Blau Syndrome Foundation, OPMD Association, Lambert Eaton (LEMS) Family Association, Curing Retinal Blindness Foundation, DNM1 Families, American Behcet's Disease Association, Cure VCP Disease,INC, Endosalpingiosis Foundation, Inc, People with Narcolepsy 4 People with Narcolepsy (PWN4PWN), 1p36 Deletion Support and Awareness, SKDEAS Foundation, Taylor's Tale Foundation, Team4Travis, BLFS Incorporate, ML4 Foundation, White Sutton Syndrome Foundation, Kleine-Levin Syndrome Foundation, Cornelia de Lange Syndrome Foundation, The Malan Syndrome Foundation, The Cute Syndrome Foundation, Krishnan Family Foundation, International Society of Mannosidosis and Related Disorders, CureARS A NJ Nonprofit Corporation, Kawasaki Disease Foundation