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

Официальное название

Coordination of Rare Diseases at Sanford

Обзор

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.

Подробное описание

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.

Первичные конечные точки

• 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. [Срок оценки: 100 years]

Критерии участия

Критерии включения

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

Критерии исключения

• Diagnosis of a disease which is not rare

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Нет

Дизайн исследования

Модель наблюдения

Только случаи

Центры проведения

США · 1 центр

• Sanford Health — Sioux Falls

Австралия · 1 центр

• Online Patient Enrollment System — Sydney

Идентификаторы

NCT: NCT01793168 · 03-10-014 · Hypersomnia Foundation · National Ataxia Foundation · 4p- Support Group · CdLS Foundation · Hyperacusis Research Limited · Kabuki Syndrome Network · Kawasaki Disease Foundation · Klippel-Feil Syndrome Freedom · Leiomyosarcoma Direct Research · MSS Support Group · ML4 Foundation · Stickler Involved People · IWSA · Soft Bones · PWN4PWN · aHUS · Klippel-Feil Syndrome Alliance · American MEN Support · Kleine-Levin Syndrome · All Things Kabuki · WSS Foundation · BIVA · ABDA · PROS Foundation (HLH) · Alagille Syndrome Association · Cure VCP Disease, Inc. · Lowe Syndrome Association · Pitt Hopkins · Cure Batten Disease · Hypnic Jerk/Sleep Myoclonus · 1p36 DSA · Jansen Foundation · Share and Care Network · CRMO · The Malan Syndrome Foundation · HSAN1E Society · Alstrom United Kingdomg · Athymia · CRB1 Foundation · DNM1 Families · Global DARE Foundation · KCIAF · MSUD FSG · IamGSD · Myhre Syndrome Foundation · NCBRS · PBCers Organization · Remember the Girls · RRPF · SKS Foundation · SPG15 Research Foundation · Team Telomere · TGA Project · The Cute Syndrome Foundation · WSS Foundation · Zmynd11 Gene Disorder · SPG11 and SPG15 · Endosalpingiosis Foundation · Cauda Equina Foundation · Tango2 Research Foundation · SMC1A Epilepsy · IFFGD · Noah's Hope - Hope4Bridget · Project Sebastian · ISACRA · Scheuermann's Disease Fund · BDSRA · Kennedy's Disease Assocation · Cystinosis Research Foundation · Cure Mito Foundation · Warburg Micro Research · Riaan Research Initiative · Cure Mucolipidosis · CACNA1H Alliance · IMBS Alliance · Non-Ketotic Hyperglycinemia · Corpus Callosum Disorders · SHINE Syndrome Foundation · HODA · Team4Travis · Taylor's Tale Foundation · Lambert Eaton (LEMS) Family · BARE Inc. · STAG1 Gene Foundation · Coffin Lowry Syndrome · BLFS Incorporate · Aniridia North America · Cure Blau Syndrome Foundation · ARG1D Foundation · CURE HSPB8 Myopathy · ISMRD - Beta Mannosidosis · TBX4Life · Cure DHDDS · MANDKind Foundation · Krishnan Family Foundation · SPATA Foundation · Acrodysostosis Research · ACTA2 Alliance · ANA-Aniridia North America · APDS Advocacy Coalition · CRELD1 Warriors · GNB1 Advocacy Group · Hope for PDCD Foundation · ISMRD - Beta Mannosidosis · KBG Syndrome Association · The LCC Foundation · MLD Foundation · MSA United Research · Moyamoya Foundation · OPHN1 · OPMD Association · SKDEAS Foundation · Foundation for Casey's Cure · TUBB3 Foundation · WWOX Foundation

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

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