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

Phase

N/A

Condition

Hearing Loss

Epilepsy

Osteomyelitis

Treatment

N/A

Clinical Study ID

NCT01793168

03-10-014

Kennedy's Disease Assocation

Scheuermann's Disease Fund

CURE HSPB8 Myopathy

Soft Bones

Hypnic Jerk/Sleep Myoclonus

Cure Blau Syndrome Foundation

ABDA

Myhre Syndrome Foundation

ISACRA

Corpus Callosum Disorders

CACNA1H Alliance

DBA - PFIC Network

ML4 Foundation

CRB1 Foundation

HSAN1E Society

KCIAF

Share and Care Network

Klippel-Feil Syndrome Freedom

American MEN Support

Team4Travis

SPATA Foundation

BDSRA

Taylor's Tale Foundation

Alagille Syndrome Association

Pitt Hopkins

SKS Foundation

Cure Mucolipidosis

Cure DHDDS

PROS Foundation (HLH)

SMC1A Epilepsy

Leiomyosarcoma Direct Research

Coffin Lowry Syndrome

Kabuki Syndrome Network

Klippel-Feil Syndrome Alliance

The Malan Syndrome Foundation

Non-Ketotic Hyperglycinemia

Tango2 Research Foundation

Kawasaki Disease Foundation

SPG15 Research Foundation

ARG1D Foundation

Riaan Research Initiative

STAG1 Gene Foundation

Athymia

MSS Support Group

The Cute Syndrome Foundation

aHUS

All Things Kabuki

Alstrom United Kingdomg

CRMO

TGA Project

IamGSD

Stickler Involved People

Cure VCP Disease, Inc.

WSS Foundation

MANDKind Foundation

IWSA

RRPF

Cauda Equina Foundation

Lambert Eaton (LEMS) Family

BIVA

Global DARE Foundation

Zmynd11 Gene Disorder

MSUD FSG

Aniridia North America

PWN4PWN

SPG11 and SPG15

BARE Inc.

DNM1 Families

Noah's Hope - Hope4Bridget

NCBRS

Cystinosis Research Foundation

Lowe Syndrome Association

PBCers Organization

1p36 DSA

Krishnan Family Foundation

Cure Batten Disease

ISMRD - Beta Mannosidosis

Hypersomnia Foundation

TBX4Life

Warburg Micro Research

Project Sebastian

SHINE Syndrome Foundation

IMBS Alliance

CdLS Foundation

Team Telomere

BLFS Incorporate

4p- Support Group

Kleine-Levin Syndrome

Endosalpingiosis Foundation

Jansen Foundation

Hyperacusis Research Limited

HODA

National Ataxia Foundation

Remember the Girls

IFFGD

Cure Mito Foundation

CureARS A NJ Nonprofit

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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