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

Coordination of Rare Diseases at Sanford

Sponsors

Lead Sponsor: Sanford Health

Collaborator: National Ataxia Foundation
International WAGR Syndrome Association
4p- Support Group
ML4 Foundation
Cornelia de Lange Syndrome Foundation
Stickler Involved People
Kawasaki Disease Foundation
Klippel-Feil Syndrome Alliance
Klippel-Feil Syndrome Freedom
Hyperacusis Research Limited
Hypersomnia Foundation
Kabuki Syndrome Network
Kleine-Levin Syndrome Foundation
Leiomyosarcoma Direct Research Foundation
Marinesco-Sjogren Syndrome Support Group - NORD
Mucolipidosis Type IV (ML4) Foundation
People with Narcolepsy 4 People with Narcolepsy (PWN4PWN)
Soft Bones Incorporated
American Multiple Endocrine Neoplasia Support
Atypical Hemolytic Uremic Syndrome Foundation
All Things Kabuki
Wiedemann-Steiner Syndrome Foundation
Breast Implant Victim Advocates
PROS Foundation
American Behcet's Disease Association
Alstrom United Kingdom
Athymia
Curing Retinal Blindness Foundation
HSAN1E Society
1p36 Deletion Support and Awareness
The Alagille Syndrome Alliance
Autoinflammatory Alliance
Beyond Batten
Bohring-Opitz Syndrome Foundation, INC
Cockayne Syndrome Network (Share and Care)
CRMO Foundation
Cure VCP Disease,INC
FOD Support
Cystinosis Research Foundation
Global DARE Foundation
Hypnic Jerk-Sleep Myoclonus Support Group
Jansen's Foundation
KCNMA1 Channelopathy International Advocacy Foundation
Kawasaki Disease Foundation Australia
Life with LEMS Foundation
Lowe Syndrome Association
The Malan Syndrome Foundation
Maple Syrup Urine Disease Family Support Group
International Association for Muscle Glycogen Storage Disease (IamGSD)
Myhre Syndrome Foundation
DNM1 Families
Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation
The PBCers Organization
Pitt Hopkins Research Foundation
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc
Recurrent Meningitis Association
Recurrent Respiratory Papillomatosis Foundation
Remember the Girls
Smith-Kingsmore Syndrome Foundation
SPG Research Foundation
Team Telomere
Transient Global Amnesia Project
The Charlotte & Gwenyth Gray Foundation
The Cute Syndrome Foundation
The Maddi Foundation
White Sutton Syndrome Foundation
Zmynd11 Gene Disorder

Source Sanford Health
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.

Overall Status Recruiting
Start Date July 2010
Completion Date December 2100
Primary Completion Date December 2100
Study Type Observational [Patient Registry]
Primary 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. 100 years
Enrollment 20000
Condition
Eligibility

Sampling Method: Non-Probability Sample

Criteria:

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

Gender: All

Minimum Age: N/A

Maximum Age: N/A

Healthy Volunteers: No

Overall Contact

Last Name: CoRDS Team

Phone: 1-877-658-9192

Email: [email protected]

Location
Facility: Status: Contact: Investigator:
Sanford Health | Sioux Falls, South Dakota, 57104, United States Recruiting CoRDS Team 877-658-9192 [email protected] Benjamin Forred, MBA Principal Investigator
Online Patient Enrollment System | Sydney, Australia Recruiting CoRDS Team 1-877-6589192 [email protected]
Location Countries

Australia

United States

Verification Date

July 2020

Responsible Party

Type: Sponsor

Keywords
Has Expanded Access No
Condition Browse
Acronym CoRDS
Patient Data Yes
Study Design Info

Observational Model: Case-Only

Time Perspective: Prospective

Source: ClinicalTrials.gov