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

Phase

N/A

Condition

Tic Disorders

Sleep Disorders

Kidney Failure (Pediatric)

Treatment

N/A

Clinical Study ID

NCT01793168

03-10-014

Kennedy's Disease Assocation

CURE HSPB8 Myopathy

Soft Bones

Hypnic Jerk/Sleep Myoclonus

OPMD Association

Cure Blau Syndrome Foundation

ABDA

Myhre Syndrome Foundation

Corpus Callosum Disorders

DBA - PFIC Network

CRB1 Foundation

KCIAF

Share and Care Network

American MEN Support

SPATA Foundation

BDSRA

Pitt Hopkins

Cure DHDDS

Cure Mucolipidosis

Foundation for Casey's Cure

SKS Foundation

SMC1A Epilepsy

Coffin Lowry Syndrome

Klippel-Feil Syndrome Alliance

Leiomyosarcoma Direct Research

Non-Ketotic Hyperglycinemia

SPG15 Research Foundation

ARG1D Foundation

Acrodysostosis Research

The LCC Foundation

Moyamoya Foundation

MLD Foundation

Athymia

MSS Support Group

All Things Kabuki

Alstrom United Kingdomg

TGA Project

Stickler Involved People

APDS Advocacy Coalition

IWSA

MANDKind Foundation

Cauda Equina Foundation

Lambert Eaton (LEMS) Family

KBG Syndrome Association

Global DARE Foundation

MSUD FSG

MSA United Research

BARE Inc.

WWOX Foundation

NCBRS

Cystinosis Research Foundation

1p36 DSA

TBX4Life

SHINE Syndrome Foundation

Project Sebastian

Team Telomere

Endosalpingiosis Foundation

Hope for PDCD Foundation

Jansen Foundation

National Ataxia Foundation

HODA

Remember the Girls

IFFGD

CureARS A NJ Nonprofit

Scheuermann's Disease Fund

ISACRA

OPHN1

CACNA1H Alliance

ML4 Foundation

HSAN1E Society

Team4Travis

Klippel-Feil Syndrome Freedom

Taylor's Tale Foundation

Alagille Syndrome Association

PROS Foundation (HLH)

Kabuki Syndrome Network

The Malan Syndrome Foundation

Tango2 Research Foundation

Kawasaki Disease Foundation

Riaan Research Initiative

STAG1 Gene Foundation

TUBB3 Foundation

CRELD1 Warriors

The Cute Syndrome Foundation

aHUS

CRMO

IamGSD

Cure VCP Disease, Inc.

WSS Foundation

ACTA2 Alliance

RRPF

BIVA

Zmynd11 Gene Disorder

PWN4PWN

Aniridia North America

SPG11 and SPG15

DNM1 Families

Noah's Hope - Hope4Bridget

Lowe Syndrome Association

PBCers Organization

Krishnan Family Foundation

Cure Batten Disease

ISMRD - Beta Mannosidosis

Hypersomnia Foundation

Warburg Micro Research

IMBS Alliance

CdLS Foundation

BLFS Incorporate

4p- Support Group

Kleine-Levin Syndrome

Hyperacusis Research Limited

ANA-Aniridia North America

GNB1 Advocacy Group

Cure Mito Foundation

SKDEAS Foundation

All Genders

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or anunaffected carrier of a rare/uncommon disease

Exclusion

Exclusion Criteria:

Diagnosis of a disease which is not rare

Study Design

July 01, 2010

December 31, 2100

Study 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.

Connect with a study center

Online Patient Enrollment System
Sydney,
Australia
Active - Recruiting
Sanford Health
Sioux Falls, South Dakota 57104
United States
Active - Recruiting

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