Ignite Creation Date:
2024-05-06 @ 1:22 AM
Last Modification Date:
2024-10-26 @ 11:03 AM
Study NCT ID:
NCT01793168
Status:
RECRUITING
Last Update Posted:
2024-01-19
First Post:
2013-02-13
Brief Title:
Rare Disease Patient Registry Natural History Study - Coordination of Rare Diseases at Sanford
Sponsor:
Sanford Health
Organization:
Sanford Health
Organization Data
Organization:
Sanford Health
Class:
OTHER
Study ID:
03-10-014
Study Type:
None
Study Domain:
None
Study Link:
None
Lead Sponsor:
Sanford Health
Lead Sponsor Class:
OTHER
Responsible Party:
None
Responsible Party Title:
None
Responsible Party Type:
SPONSOR
Responsible Party Affiliation:
None
Old Name:
None
Old Organization:
None
Collaborators
| Name | Class |
|---|---|
| National Ataxia Foundation | OTHER |
| International WAGR Syndrome Association | UNKNOWN |
| 4p- Support Group | OTHER |
| ML4 Foundation | UNKNOWN |
| Cornelia de Lange Syndrome Foundation | UNKNOWN |
| Stickler Involved People | UNKNOWN |
| Kawasaki Disease Foundation | UNKNOWN |
| Klippel-Feil Syndrome Alliance | UNKNOWN |
| Klippel-Feil Syndrome Freedom | UNKNOWN |
| Hyperacusis Research Limited | UNKNOWN |
| Hypersomnia Foundation | UNKNOWN |
| Kabuki Syndrome Network | OTHER |
| Kleine-Levin Syndrome Foundation | UNKNOWN |
| Leiomyosarcoma Direct Research Foundation | UNKNOWN |
| Marinesco-Sjogren Syndrome Support Group - NORD | OTHER |
| Mucolipidosis Type IV ML4 Foundation | UNKNOWN |
| People with Narcolepsy 4 People with Narcolepsy PWN4PWN | UNKNOWN |
| Soft Bones Incorporated | UNKNOWN |
| American Multiple Endocrine Neoplasia Support | UNKNOWN |
| Atypical Hemolytic Uremic Syndrome Foundation | UNKNOWN |
| All Things Kabuki | UNKNOWN |
| Wiedemann-Steiner Syndrome Foundation | UNKNOWN |
| Breast Implant Victim Advocates | UNKNOWN |
| PROS Foundation | UNKNOWN |
| American Behcets Disease Association | UNKNOWN |
| Alstrom United Kingdom | UNKNOWN |
| Athymia | UNKNOWN |
| Curing Retinal Blindness Foundation | UNKNOWN |
| HSAN1E Society | UNKNOWN |
| 1p36 Deletion Support and Awareness | UNKNOWN |
| The Alagille Syndrome Alliance | UNKNOWN |
| Autoinflammatory Alliance | UNKNOWN |
| Beyond Batten Disease Foundation | OTHER |
| Bohring-Opitz Syndrome Foundation INC | UNKNOWN |
| Cockayne Syndrome Network Share and Care | UNKNOWN |
| CRMO Foundation | UNKNOWN |
| Cure VCP DiseaseINC | UNKNOWN |
| FOD Support | UNKNOWN |
| Cystinosis Research Foundation | OTHER |
| Global DARE Foundation | UNKNOWN |
| Hypnic Jerk-Sleep Myoclonus Support Group | UNKNOWN |
| Jansens Foundation | UNKNOWN |
| KCNMA1 Channelopathy International Advocacy Foundation | UNKNOWN |
| Kawasaki Disease Foundation Australia | UNKNOWN |
| Life with LEMS Foundation | UNKNOWN |
| Lowe Syndrome Association | UNKNOWN |
| The Malan Syndrome Foundation | UNKNOWN |
| Maple Syrup Urine Disease Family Support Group | UNKNOWN |
| International Association for Muscle Glycogen Storage Disease IamGSD | UNKNOWN |
| Myhre Syndrome Foundation | UNKNOWN |
| DNM1 Families | UNKNOWN |
| Nicolaides Baraitser Syndrome NCBRS Worldwide Foundation | UNKNOWN |
| The PBCers Organization | OTHER |
| Pitt Hopkins Research Foundation | UNKNOWN |
| Recurrent Meningitis Association | UNKNOWN |
| Recurrent Respiratory Papillomatosis Foundation | UNKNOWN |
| Remember the Girls | UNKNOWN |
| Smith-Kingsmore Syndrome Foundation | UNKNOWN |
| SPG Research Foundation | UNKNOWN |
| Team Telomere | UNKNOWN |
| Transient Global Amnesia Project | UNKNOWN |
| The Charlotte Gwenyth Gray Foundation | UNKNOWN |
| The Cute Syndrome Foundation | UNKNOWN |
| The Maddi Foundation | UNKNOWN |
| White Sutton Syndrome Foundation | UNKNOWN |
| Zmynd11 Gene Disorder | UNKNOWN |
| Cauda Equina Foundation Inc | UNKNOWN |
| Tango2 Research Foundation | UNKNOWN |
| Noahs Hope - Hope4Bridget Foundation | UNKNOWN |
| Project Sebastian | UNKNOWN |
| SMC1A Epilepsy Foundation | UNKNOWN |
| International Foundation for Gastrointestinal Disorders | UNKNOWN |
| Endosalpingiosis Foundation Inc | UNKNOWN |
| International Sacral AgenesisCaudal Regression Association ISACRA | UNKNOWN |
| Scheuermanns Disease Fund | UNKNOWN |
| Batten Disease Support and Research Association | UNKNOWN |
| Kennedys Disease Association | UNKNOWN |
| Cure Mito Foundation | UNKNOWN |
| Warburg Micro Research Foundation | UNKNOWN |
| Cure Mucolipidosis | UNKNOWN |
| Riaan Research Initiative | UNKNOWN |
| CureARS A NJ Nonprofit Corporation | UNKNOWN |
| CACNA1H Alliance | UNKNOWN |
| IMBS Alliance | UNKNOWN |
| SHINE-Syndrome Foundaion | UNKNOWN |
| Non- Ketotic Hyperglycinemia NKH Crusaders | UNKNOWN |
| Hypertrophic Olivary Degeneration Association HODA | UNKNOWN |
| National Organization for Disorders of the Corpus Callosum NODCC | UNKNOWN |
| Team4Travis | UNKNOWN |
| Taylors Tale Foundation | UNKNOWN |
| Lambert Eaton LEMS Family Association | UNKNOWN |
| BARE Inc | UNKNOWN |
| STAG1 Gene Foundation | UNKNOWN |
| Coffin Lowry Syndrome Foundation | UNKNOWN |
| BLFS Incorporate | UNKNOWN |
| Aniridia North America | UNKNOWN |
| Cure Blau Syndrome Foundation | UNKNOWN |
| ARG1D Foundation | UNKNOWN |
| CURE HSPB8 Myopathy | UNKNOWN |
| International Society of Mannosidosis and Related Disorders | UNKNOWN |
| TBX4Life | UNKNOWN |
| Cure DHDDS | UNKNOWN |
| MANDKind Foundation | UNKNOWN |
| Krishnan Family Foundation | UNKNOWN |
| SPATA Foundation | UNKNOWN |