Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford (CoRDS)

June 20, 2022 updated by: Sanford Health

Coordination of Rare Diseases at Sanford

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.

Study Overview

Status

Recruiting

Conditions

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 Type

Observational

Enrollment (Anticipated)

20000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

  • Australia
      • Sydney, Australia
        • Recruiting
        • Online Patient Enrollment System
        • Contact:
  • United States
    • South Dakota
      • Sioux Falls, South Dakota, United States, 57104
        • Recruiting
        • Sanford Health
        • Contact:
        • Principal Investigator:
          • Benjamin Forred, MBA

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

Unaffected carriers, undiagnosed and those with a rare disease or rare condition.

Description

Inclusion Criteria:

  • Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease

Exclusion Criteria:

  • Diagnosis of a disease which is not rare

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Case-Only
  • Time Perspectives: Prospective

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
To accelerate research into rare disorders by connecting individuals who are interested in research and who have been diagnosed with a rare disorder (or a disorder of unknown prevalence, or who are undiagnosed) with researchers who study rare diseases.
Time Frame: 100 years
100 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Collaborators

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

July 1, 2010

Primary Completion (Anticipated)

December 1, 2100

Study Completion (Anticipated)

December 1, 2100

Study Registration Dates

First Submitted

February 13, 2013

First Submitted That Met QC Criteria

February 13, 2013

First Posted (Estimate)

February 15, 2013

Study Record Updates

Last Update Posted (Actual)

June 27, 2022

Last Update Submitted That Met QC Criteria

June 20, 2022

Last Verified

June 1, 2022

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 03-10-014
  • Hypersomnia Foundation (Registry Identifier: Hypersomnia Registry)
  • National Ataxia Foundation (Registry Identifier: Ataxia Registry)
  • 4p- Support Group (Registry Identifier: 4p-/Wolfhirschhorn Syndrome Registry)
  • CdLS Foundation (Registry Identifier: Cornelia de Lange Syndrome Registry)
  • Hyperacusis Research Limited (Registry Identifier: Hyperacusis Registry)
  • Kabuki Syndrome Network (Registry Identifier: Kabuki Syndrome Registry)
  • Kawasaki Disease Foundation (Registry Identifier: Kawasaki Disease Registry)
  • Klippel-Feil Syndrome Freedom (Registry Identifier: Klippel-Feil Syndrome Registry)
  • Leiomyosarcoma Direct Research (Registry Identifier: Leiomyosarcoma Registry)
  • MSS Support Group (Registry Identifier: Marinesco-Sjogren Syndrome Registry)
  • ML4 Foundation (Registry Identifier: Mucolipidosis Type IV (ML4) Registry)
  • Stickler Involved People (Registry Identifier: Stickler Syndrome Registry)
  • IWSA (Registry Identifier: WAGR Syndrome Registry)
  • Soft Bones (Registry Identifier: Hypophosphatasia Registry)
  • PWN4PWN (Registry Identifier: Narcolepsy Registry)
  • aHUS (Registry Identifier: aHUS Registry)
  • Klippel-Feil Syndrome Alliance (Registry Identifier: KFS Registry)
  • American MEN Support (Registry Identifier: Mulitiple Endocrine Neoplasia Registry)
  • Kleine-Levin Syndrome (Registry Identifier: Kleine-Levin Syndrome Registry)
  • All Things Kabuki (Registry Identifier: Kabuki Syndrome Registry)
  • WSS Foundation (Registry Identifier: White Sutton Syndrome Foundation Registry)
  • BIVA (Registry Identifier: Brest Implant-Associated ALCL Registry)
  • ABDA (Registry Identifier: American Bechet's Disease Association Registry)
  • PROS Foundation (HLH) (Registry Identifier: Hemophagocytic Lymphohistiocytosis (HLH) Registry)
  • Alagille Syndrome Association (Registry Identifier: Alagillle Syndrome Registry)
  • Cure VCP Disease, Inc. (Registry Identifier: IBMPFD Registry)
  • Lowe Syndrome Association (Registry Identifier: Lowe Syndrome Registry)
  • Pitt Hopkins (Registry Identifier: Pitt Hopkins Registry)
  • Cure Batten Disease (Registry Identifier: Batten Disease Registry)
  • Hypnic Jerk/Sleep Myoclonus (Registry Identifier: Hypnic Jerk/Sleep Myoclonus Registry)
  • 1p36 DSA (Registry Identifier: 1p36 Deletion Syndrome Registry)
  • Jansen Foundation (Registry Identifier: The Jansen Foundation Registry)
  • Share and Care Network (Registry Identifier: Cockayne Syndrome Registry)
  • CRMO (Registry Identifier: CRMO Registry)
  • The Malan Syndrome Foundation (Registry Identifier: Malan Syndrome Registry)
  • HSAN1E Society (Registry Identifier: HSAN1E Registry)
  • Alstrom United Kingdomg (Registry Identifier: Alstrom United Kingdom Registry)
  • Athymia (Registry Identifier: Athymia Registry)
  • CRB1 Foundation (Registry Identifier: Curing Retinal Blindness Foundation Registry)
  • DNM1 Families (Registry Identifier: DNM1 Mutations Registry)
  • Global DARE Foundation (Registry Identifier: Global DARE Foundation Registry)
  • KCIAF (Registry Identifier: KCNMA1 Channelopathy International Advocacy Foundation Registry)
  • MSUD FSG (Registry Identifier: Maple Syrup Urine Disease Family Support Group Registry)
  • IamGSD (Registry Identifier: International Association for Muscle Glycogen Storage Disease Registry)
  • Myhre Syndrome Foundation (Registry Identifier: Myhre Syndrome Foundation Registry)
  • NCBRS (Registry Identifier: Nicolaides Baraitser Syndrome Worldwide Foundation Registry)
  • PBCers Organization (Registry Identifier: PBCers Organization Registry)
  • DBA - PFIC Network (Registry Identifier: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc Registry)
  • Remember the Girls (Registry Identifier: Remember the Girls - X-Linked Carriers Registry)
  • RRPF (Registry Identifier: Recurrent Respiratory Papillomatosis Foundation Registry)
  • SKS Foundation (Registry Identifier: Smith-Kingsmore Syndrome Foundation Registry)
  • SPG15 Research Foundation (Registry Identifier: SPG Research Foundation Registry)
  • Team Telomere (Registry Identifier: Team Telomere Registry)
  • TGA Project (Registry Identifier: Transient Global Amnesia Project Registry)
  • The Cute Syndrome Foundation (Registry Identifier: The Cute Syndrome Foundation Registry)
  • Zmynd11 Gene Disorder (Registry Identifier: Zmynd11 Gene Disorder Registry)
  • SPG11 and SPG15 (Registry Identifier: The Maddi Foundation Registry)
  • Endosalpingiosis Foundation (Registry Identifier: Endosalpingiosis Foundation, Inc Registry)
  • Cauda Equina Foundation (Registry Identifier: Cauda Equina Foundation, Inc Registry)
  • Tango2 Research Foundation (Registry Identifier: Tango2 Research Foundation Registry)
  • SMC1A Epilepsy (Registry Identifier: SMC1A Epilepsy Foundation Registry)
  • IFFGD (Registry Identifier: International Foundation for Gastrointestinal Disorders)
  • Noah's Hope - Hope4Bridget (Registry Identifier: Noah's Hope - Hope4Bridget Foundation Registry)
  • Project Sebastian (Registry Identifier: Project Sebastian Registry)
  • ISACRA (Registry Identifier: International Sacral Agenesis/Caudal Regression Association (SACRA))
  • Scheuermann's Disease Fund (Registry Identifier: Scheuermann's Disease Fund Registry)
  • BDSRA (Registry Identifier: Batten Disease Support and Research Association)
  • Kennedy's Disease Assocation (Registry Identifier: Kennedy's Disease Association Registry)
  • Cystinosis Research Foundation (Registry Identifier: Cystinosis Research Foundation Registry)
  • Cure Mito Foundation (Registry Identifier: Cure Mito Foundation Registry)
  • Warburg Micro Research (Registry Identifier: Warburg Micro Research Foundation Registry)
  • Riaan Research Initiative (Registry Identifier: Riaan Research Initiative Registry)
  • Cure Mucolipidosis (Registry Identifier: Cure Mucolipidosis Registry)
  • CureARS A NJ Nonprofit (Registry Identifier: CureARS Registry)
  • CACNA1H Alliance (Registry Identifier: CACNA1H Alliance Registry)
  • IMBS Alliance (Registry Identifier: IMBS Alliance Registry)
  • Non-Ketotic Hyperglycinemia (Registry Identifier: NKH Crusaders Registry)
  • Corpus Callosum Disorders (Registry Identifier: NODCC Registry)
  • SHINE Syndrome Foundation (Registry Identifier: SHINE Syndrome Foundation Registry)
  • HODA (Registry Identifier: Hypertrophic Olivary Degeneration Association (HODA) Registry)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

Yes

IPD Plan Description

Deidentified participant data is shared with contracted patient advocacy groups for non-research purposes. Parties interested in accessing data are welcome to apply (cost-free) at http://www.sanfordresearch.org/cords/researchers/.

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact [email protected]. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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