Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
| Status: | Recruiting |
|---|---|
| Conditions: | Arthritis, Cancer, Insomnia Sleep Studies, Other Indications, Other Indications, Other Indications, Other Indications, Other Indications, Other Indications, Other Indications, Cardiology, Cardiology, Cardiology, Infectious Disease, Hospital, Neurology, Neurology, Neurology, Neurology, Neurology, Neurology, Neurology, Neurology, Neurology, Neurology, Ocular, Ocular, Ocular, Ocular, Ocular, Ocular, Orthopedic, Orthopedic, Orthopedic, Women's Studies, Endocrine, Endocrine, Endocrine, Endocrine, Endocrine, Endocrine, Gastrointestinal, Nephrology, Hematology, Hematology, Diabetes, Dermatology, Rheumatology, Metabolic |
| Therapuetic Areas: | Cardiology / Vascular Diseases, Dermatology / Plastic Surgery, Endocrinology, Gastroenterology, Hematology, Immunology / Infectious Diseases, Nephrology / Urology, Neurology, Oncology, Ophthalmology, Pharmacology / Toxicology, Psychiatry / Psychology, Rheumatology, Orthopedics / Podiatry, Other, Reproductive |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 3/8/2019 |
| Start Date: | July 2010 |
| End Date: | December 2100 |
| Contact: | CoRDS Team |
| Email: | cords@sanfordhealth.org |
| Phone: | 1-877-658-9192 |
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.
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.
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.
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.
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
We found this trial at
2
sites
Sioux Falls, South Dakota 57104
Principal Investigator: Jill Weimer, PhD
Phone: 877-658-9192
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