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