Viewing Study NCT01793168

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Ignite Creation Date: 2025-12-24 @ 5:34 PM
Ignite Modification Date: 2026-02-11 @ 3:55 AM
Study NCT ID: NCT01793168
Status: RECRUITING
Last Update Posted: 2025-05-29
First Post: 2013-02-13
Is NOT Gene Therapy: True
Has Adverse Events: False
Brief Title: Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
Sponsor: Sanford Health
Organization:
Overview Dates Organization Conditions Design Enrollment Locations Outcomes Modules Raw JSON

Study Overview

Official Title: Coordination of Rare Diseases at Sanford
Status: RECRUITING
Status Verified Date: 2025-05
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 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS 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 researcher's 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 parent/LAR 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: False
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?:

Secondary ID Infos

Secondary ID Type Domain Link View
Hypersomnia Foundation REGISTRY Hypersomnia Registry View
National Ataxia Foundation REGISTRY Ataxia Registry View
CdLS Foundation REGISTRY Cornelia de Lange Syndrome Registry View
Hyperacusis Research Limited REGISTRY Hyperacusis Registry View
Kabuki Syndrome Network REGISTRY Kabuki Syndrome Registry View
Kawasaki Disease Foundation REGISTRY Kawasaki Disease Registry View
Klippel-Feil Syndrome Freedom REGISTRY Klippel-Feil Syndrome Registry View
Leiomyosarcoma Direct Research REGISTRY Leiomyosarcoma Registry View
MSS Support Group REGISTRY Marinesco-Sjogren Syndrome Registry View
ML4 Foundation REGISTRY Mucolipidosis Type IV (ML4) Registry View
Stickler Involved People REGISTRY Stickler Syndrome Registry View
IWSA REGISTRY WAGR Syndrome Registry View
Soft Bones REGISTRY Hypophosphatasia Registry View
PWN4PWN REGISTRY Narcolepsy Registry View
aHUS REGISTRY aHUS Registry View
Klippel-Feil Syndrome Alliance REGISTRY KFS Registry View
American MEN Support REGISTRY Mulitiple Endocrine Neoplasia Registry View
Kleine-Levin Syndrome REGISTRY Kleine-Levin Syndrome Registry View
All Things Kabuki REGISTRY Kabuki Syndrome Registry View
WSS Foundation REGISTRY Wiedemann-Steiner Syndrome Registry View
BIVA REGISTRY Brest Implant-Associated ALCL Registry View
ABDA REGISTRY American Bechet's Disease Association Registry View
OPMD Association REGISTRY OPMD Association Registry View
4p- Support Group REGISTRY 4p-/Wolfhirschhorn Syndrome Registry View
PROS Foundation (HLH) REGISTRY (HLH) Registry View
Alagille Syndrome Association REGISTRY Alagillle Syndrome Registry View
Cure VCP Disease, Inc. REGISTRY IBMPFD Registry View
Lowe Syndrome Association REGISTRY Lowe Syndrome Registry View
Pitt Hopkins REGISTRY Pitt Hopkins Registry View
Cure Batten Disease REGISTRY Batten Disease Registry View
Hypnic Jerk/Sleep Myoclonus REGISTRY Hypnic Jerk/Sleep Myoclonus Registry View
1p36 DSA REGISTRY 1p36 Deletion Syndrome Registry View
Jansen Foundation REGISTRY The Jansen Foundation Registry View
Share and Care Network REGISTRY Cockayne Syndrome Registry View
CRMO REGISTRY CRMO Registry View
The Malan Syndrome Foundation REGISTRY Malan Syndrome Registry View
HSAN1E Society REGISTRY HSAN1E Registry View
Alstrom United Kingdomg REGISTRY Alstrom United Kingdom Registry View
Athymia REGISTRY Athymia Registry View
CRB1 Foundation REGISTRY Curing Retinal Blindness Foundation Registry View
DNM1 Families REGISTRY DNM1 Mutations Registry View
Global DARE Foundation REGISTRY Global DARE Foundation Registry View
KCIAF REGISTRY KCNMA1 Channelopathy International Advocacy Foundation Registry View
MSUD FSG REGISTRY Maple Syrup Urine Disease Family Support Group Registry View
IamGSD REGISTRY International Association for Muscle Glycogen Storage Disease Registry View
Myhre Syndrome Foundation REGISTRY Myhre Syndrome Foundation Registry View
NCBRS REGISTRY Nicolaides Baraitser Syndrome Worldwide Foundation Registry View
PBCers Organization REGISTRY PBCers Organization Registry View
Remember the Girls REGISTRY Remember the Girls - X-Linked Carriers Registry View
RRPF REGISTRY Recurrent Respiratory Papillomatosis Foundation Registry View
SKS Foundation REGISTRY Smith-Kingsmore Syndrome Foundation Registry View
SPG15 Research Foundation REGISTRY SPG Research Foundation Registry View
Team Telomere REGISTRY Team Telomere Registry View
TGA Project REGISTRY Transient Global Amnesia Project Registry View
The Cute Syndrome Foundation REGISTRY The Cute Syndrome Foundation Registry View
WSS Foundation REGISTRY White Sutton Syndrome Foundation Registry View
Zmynd11 Gene Disorder REGISTRY Zmynd11 Gene Disorder Registry View
SPG11 and SPG15 REGISTRY The Maddi Foundation Registry View
Endosalpingiosis Foundation REGISTRY Endosalpingiosis Foundation, Inc Registry View
Cauda Equina Foundation REGISTRY Cauda Equina Foundation, Inc Registry View
Tango2 Research Foundation REGISTRY Tango2 Research Foundation Registry View
SMC1A Epilepsy REGISTRY SMC1A Epilepsy Foundation Registry View
IFFGD REGISTRY International Foundation for Gastrointestinal Disorders View
Noah's Hope - Hope4Bridget REGISTRY Noah's Hope - Hope4Bridget Foundation Registry View
Project Sebastian REGISTRY Project Sebastian Registry View
ISACRA REGISTRY International Sacral Agenesis/Caudal Regression Association (SACRA) View
Scheuermann's Disease Fund REGISTRY Scheuermann's Disease Fund Registry View
BDSRA REGISTRY Batten Disease Support and Research Association View
Kennedy's Disease Assocation REGISTRY Kennedy's Disease Association Registry View
Cystinosis Research Foundation REGISTRY Cystinosis Research Foundation Registry View
Cure Mito Foundation REGISTRY Cure Mito Foundation Registry View
Warburg Micro Research REGISTRY Warburg Micro Research Foundation Registry View
Riaan Research Initiative REGISTRY Riaan Research Initiative Registry View
Cure Mucolipidosis REGISTRY Cure Mucolipidosis Registry View
CACNA1H Alliance REGISTRY CACNA1H Alliance Registry View
IMBS Alliance REGISTRY IMBS Alliance Registry View
Non-Ketotic Hyperglycinemia REGISTRY NKH Crusaders Registry View
Corpus Callosum Disorders REGISTRY NODCC Registry View
SHINE Syndrome Foundation REGISTRY SHINE Syndrome Foundation Registry View
HODA REGISTRY HODA Registry View
Team4Travis REGISTRY Team4Travis Registry View
Taylor's Tale Foundation REGISTRY Taylor's Tale Foundation Registry View
Lambert Eaton (LEMS) Family REGISTRY (LEMS) Family Association Registry View
BARE Inc. REGISTRY BARE Inc. Registry View
STAG1 Gene Foundation REGISTRY STAG1 Gene Foundation Registry View
Coffin Lowry Syndrome REGISTRY CLS Foundation Registry View
BLFS Incorporate REGISTRY BLFS Incorporate Registry View
Aniridia North America REGISTRY Aniridia North America Registry View
Cure Blau Syndrome Foundation REGISTRY Cure Blau Syndrome Foundation Registry View
ARG1D Foundation REGISTRY ARG1D Foundation Registry View
CURE HSPB8 Myopathy REGISTRY CURE HSPB8 Myopathy Registry View
ISMRD - Beta Mannosidosis REGISTRY ISMRD Registry View
TBX4Life REGISTRY TBX4Life Registry View
Cure DHDDS REGISTRY Cure DHDDS Registry View
MANDKind Foundation REGISTRY MANDKind Foundation Registry View
Krishnan Family Foundation REGISTRY Krishnan Family Foundation Registry View
SPATA Foundation REGISTRY SPATA Foundation Registry View
Acrodysostosis Research REGISTRY 1. Acrodysostosis Support and Research Registry View
ACTA2 Alliance REGISTRY ACTA2 Alliance Registry View
ANA-Aniridia North America REGISTRY ANA-Aniridia North America Registry View
APDS Advocacy Coalition REGISTRY APDS Advocacy Coalition View
CRELD1 Warriors REGISTRY CRELD1 Warriors View
GNB1 Advocacy Group REGISTRY GNB1 Advocacy Group View
Hope for PDCD Foundation REGISTRY Hope for PDCD Foundation View
ISMRD - Beta Mannosidosis REGISTRY ISMRD - Beta Mannosidosis View
KBG Syndrome Association REGISTRY KBG Syndrome Association Registry View
The LCC Foundation REGISTRY The LCC Foundation Registry View
MLD Foundation REGISTRY MLD Foundation Registry View
MSA United Research REGISTRY MSA United Research Consortium Registry View
Moyamoya Foundation REGISTRY Moyamoya Foundation Registry View
OPHN1 REGISTRY OPHN1 Registry View
SKDEAS Foundation REGISTRY SKDEAS Foundation Registry View
Foundation for Casey's Cure REGISTRY The Foundation for Casey's Cure Registry View
TUBB3 Foundation REGISTRY TUBB3 Foundation Registry View
WWOX Foundation REGISTRY WWOX Foundation Registry View