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

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.

Primary Outcome Measures:
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 ]

Biospecimen Retention: None Retained
Biospecimen collection capability anticipated in 2014.

Estimated Enrollment: 10000
Study Start Date: July 2010
Estimated Primary Completion Date: December 2100 (Final data collection date for primary outcome measure)
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 led by Dr. David A. Pearce.

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. Dr. David A. Pearce and 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.

Eligibility

Ages Eligible for Study: Child, Adult, Senior
Sexes Eligible for Study: All
Accepts Healthy Volunteers: No
Sampling Method: Non-Probability Sample
Study Population
English speakers, globally
Criteria
Inclusion Criteria:

Diagnosis of a rare disease, a disease of unknown prevalence, or undiagnosed
Must be fluent in English
Exclusion Criteria:

Does not speak English
Is a ward of the state
Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01793168

Contacts
Contact: Jeremy Morgan 1-877-658-9192 cords@sanfordhealth.org

Locations
United States, South Dakota
Sanford Health Recruiting
Sioux Falls, South Dakota, United States, 57104
Principal Investigator: Jeremy Morgan, MS

Additional relevant MeSH terms:
Muscle Spasticity
Spastic Paraplegia, Hereditary
Eye Diseases, Hereditary
Hereditary Sensory and Motor Neuropathy
Optic Atrophies, Hereditary
Neoplastic Syndromes, Hereditary
Disease
Syndrome
Diabetes Mellitus
Epilepsy
Dementia
Peripheral Nervous System Diseases
Cataract
Cardiomyopathies
Atrophy
Hearing Loss
Deafness
Rare Diseases
Sjogren's Syndrome
Polyneuropathies
Muscular Atrophy
Retinitis Pigmentosa
Telangiectasis
Cardiomyopathy, Dilated
Leiomyosarcoma
Congenital Abnormalities
Nephrotic Syndrome
Nephrosis
Craniocerebral Trauma
Ataxia

ClinicalTrials.gov processed this record on June 15, 2017