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
Study Overview
Official Title:
Coordination of Rare Diseases at Sanford
Status:
RECRUITING
Status Verified Date:
2024-01
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
CoRDS
Brief 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 7000 rare diseases The registry is free for patients to enroll and researchers to access Visit sanfordresearchorgCoRDS to enroll
Detailed Description:
CoRDS collects contact sociodemographic and health information about participants This information is entered into CoRDS and linked to a unique coded identifier Below are some examples of information requested on the Questionnaire that will be entered into CoRDS
Contact information Name Mailing Address Phone Number Email Address
Sociodemographic information Date of Birth Place of Birth Sex Gender Ethnicity
Health information Family History Information related to Diagnosis
De-identified information in CoRDS will be made available to researchers if they have obtained approval for their research project from 1 the Institutional Review Board IRB at the researchers institution and 2 a panel of experts
A subset of de-identified information collected from each profile may be shared with certain other databases This is done in order to help improve understanding of rare diseases to avoid the duplication of efforts and to collaborate with existing research efforts with organizations dedicated to rare diseases
Participants may elect to have their information shared with patient advocacy groups PAGs representing individuals with rare or uncommon diseases who have partnered with CoRDS The PAG will sign an agreement stating that they will not use the information for Research purposes CoRDS personnel will not be held responsible for the use of information by the PAG
The CoRDS Registry will not be paid by Researchers Other Patient Registries or Patient Advocacy Groups PAGs for access to information in CoRDS
If a parentLAR consents on behalf of a minor CoRDS will contact the participant when he or she reaches the age of 18 in order to obtain consent If this consent is not obtained in a timely manner the participant will be withdrawn from CoRDS
CoRDS contacts participants annually to confirm continued interest in participation in CoRDS and to request that participants update the information they have provided
Contact information Name Mailing Address Phone Number Email Address
Sociodemographic information Date of Birth Place of Birth Sex Gender Ethnicity
Health information Family History Information related to Diagnosis
De-identified information in CoRDS will be made available to researchers if they have obtained approval for their research project from 1 the Institutional Review Board IRB at the researchers institution and 2 a panel of experts
A subset of de-identified information collected from each profile may be shared with certain other databases This is done in order to help improve understanding of rare diseases to avoid the duplication of efforts and to collaborate with existing research efforts with organizations dedicated to rare diseases
Participants may elect to have their information shared with patient advocacy groups PAGs representing individuals with rare or uncommon diseases who have partnered with CoRDS The PAG will sign an agreement stating that they will not use the information for Research purposes CoRDS personnel will not be held responsible for the use of information by the PAG
The CoRDS Registry will not be paid by Researchers Other Patient Registries or Patient Advocacy Groups PAGs for access to information in CoRDS
If a parentLAR consents on behalf of a minor CoRDS will contact the participant when he or she reaches the age of 18 in order to obtain consent If this consent is not obtained in a timely manner the participant will be withdrawn from CoRDS
CoRDS contacts participants annually to confirm continued interest in participation in CoRDS and to request that participants update the information they have provided
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| SPATA Foundation | REGISTRY | SPATA Foundation Registry | None |
| Hypersomnia Foundation | REGISTRY | None | None |
| National Ataxia Foundation | REGISTRY | None | None |
| 4p- Support Group | REGISTRY | None | None |
| CdLS Foundation | REGISTRY | None | None |
| Hyperacusis Research Limited | REGISTRY | None | None |
| Kabuki Syndrome Network | REGISTRY | None | None |
| Kawasaki Disease Foundation | REGISTRY | None | None |
| Klippel-Feil Syndrome Freedom | REGISTRY | None | None |
| Leiomyosarcoma Direct Research | REGISTRY | None | None |
| MSS Support Group | REGISTRY | None | None |
| ML4 Foundation | REGISTRY | None | None |
| Stickler Involved People | REGISTRY | None | None |
| IWSA | REGISTRY | None | None |
| Soft Bones | REGISTRY | None | None |
| PWN4PWN | REGISTRY | None | None |
| aHUS | REGISTRY | None | None |
| Klippel-Feil Syndrome Alliance | REGISTRY | None | None |
| American MEN Support | REGISTRY | None | None |
| Kleine-Levin Syndrome | REGISTRY | None | None |
| All Things Kabuki | REGISTRY | None | None |
| WSS Foundation | REGISTRY | None | None |
| BIVA | REGISTRY | None | None |
| ABDA | REGISTRY | None | None |
| PROS Foundation HLH | REGISTRY | None | None |
| Alagille Syndrome Association | REGISTRY | None | None |
| Cure VCP Disease Inc | REGISTRY | None | None |
| Lowe Syndrome Association | REGISTRY | None | None |
| Pitt Hopkins | REGISTRY | None | None |
| Cure Batten Disease | REGISTRY | None | None |
| Hypnic JerkSleep Myoclonus | REGISTRY | None | None |
| 1p36 DSA | REGISTRY | None | None |
| Jansen Foundation | REGISTRY | None | None |
| Share and Care Network | REGISTRY | None | None |
| CRMO | REGISTRY | None | None |
| The Malan Syndrome Foundation | REGISTRY | None | None |
| HSAN1E Society | REGISTRY | None | None |
| Alstrom United Kingdomg | REGISTRY | None | None |
| Athymia | REGISTRY | None | None |
| CRB1 Foundation | REGISTRY | None | None |
| DNM1 Families | REGISTRY | None | None |
| Global DARE Foundation | REGISTRY | None | None |
| KCIAF | REGISTRY | None | None |
| MSUD FSG | REGISTRY | None | None |
| IamGSD | REGISTRY | None | None |
| Myhre Syndrome Foundation | REGISTRY | None | None |
| NCBRS | REGISTRY | None | None |
| PBCers Organization | REGISTRY | None | None |
| Remember the Girls | REGISTRY | None | None |
| RRPF | REGISTRY | None | None |
| SKS Foundation | REGISTRY | None | None |
| SPG15 Research Foundation | REGISTRY | None | None |
| Team Telomere | REGISTRY | None | None |
| TGA Project | REGISTRY | None | None |
| The Cute Syndrome Foundation | REGISTRY | None | None |
| WSS Foundation | REGISTRY | None | None |
| Zmynd11 Gene Disorder | REGISTRY | None | None |
| SPG11 and SPG15 | REGISTRY | None | None |
| Endosalpingiosis Foundation | REGISTRY | None | None |
| Cauda Equina Foundation | REGISTRY | None | None |
| Tango2 Research Foundation | REGISTRY | None | None |
| SMC1A Epilepsy | REGISTRY | None | None |
| IFFGD | REGISTRY | None | None |
| Noahs Hope - Hope4Bridget | REGISTRY | None | None |
| Project Sebastian | REGISTRY | None | None |
| ISACRA | REGISTRY | None | None |
| Scheuermanns Disease Fund | REGISTRY | None | None |
| BDSRA | REGISTRY | None | None |
| Kennedys Disease Assocation | REGISTRY | None | None |
| Cystinosis Research Foundation | REGISTRY | None | None |
| Cure Mito Foundation | REGISTRY | None | None |
| Warburg Micro Research | REGISTRY | None | None |
| Riaan Research Initiative | REGISTRY | None | None |
| Cure Mucolipidosis | REGISTRY | None | None |
| CACNA1H Alliance | REGISTRY | None | None |
| IMBS Alliance | REGISTRY | None | None |
| Non-Ketotic Hyperglycinemia | REGISTRY | None | None |
| Corpus Callosum Disorders | REGISTRY | None | None |
| SHINE Syndrome Foundation | REGISTRY | None | None |
| HODA | REGISTRY | None | None |
| Team4Travis | REGISTRY | None | None |
| Taylors Tale Foundation | REGISTRY | None | None |
| Lambert Eaton LEMS Family | REGISTRY | None | None |
| BARE Inc | REGISTRY | None | None |
| STAG1 Gene Foundation | REGISTRY | None | None |
| Coffin Lowry Syndrome | REGISTRY | None | None |
| BLFS Incorporate | REGISTRY | None | None |
| Aniridia North America | REGISTRY | None | None |
| Cure Blau Syndrome Foundation | REGISTRY | None | None |
| ARG1D Foundation | REGISTRY | None | None |
| CURE HSPB8 Myopathy | REGISTRY | None | None |
| ISMRD - Beta Mannosidosis | REGISTRY | None | None |
| TBX4Life | REGISTRY | None | None |
| Cure DHDDS | REGISTRY | None | None |
| MANDKind Foundation | REGISTRY | None | None |
| Krishnan Family Foundation | REGISTRY | None | None |