The Duchenne Registry

Status Recruiting

Clinical Trial Summary

The Duchenne Registry is an online, patient-report registry for individuals with Duchenne and Becker muscular dystrophy and carrier females. The purpose of the Registry is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, The Duchenne Registry is a valuable resource for clinicians and researchers in academia and industry, allowing access to de-identified datasets provided by patients and their families-information that is vital to advances in the care and treatment of Duchenne. The Duchenne Registry is a member of the TREAT-NMD Neuromuscular Network.

Clinical Trial Description

The Duchenne Registry (previously DuchenneConnect) was created in 2007 by Parent Project Muscular Dystrophy (PPMD), with assistance from the NIH, the CDC, and Emory Genetics. In early 2011, PPMD alone began financing the registry's operation and maintenance, and is the sole guardian of The Duchenne Registry and its material. Questions may be addressed to the Duchenne Registry Coordinators at telephone 888-520-8675 or coordinator@duchenneregistry.org. The Duchenne Registry Coordinators are certified genetic counselors who are available to answer questions regarding the registration process, genetic testing and counseling, and clinical trials and research studies. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT02069756
Study type	Observational [Patient Registry]
Source	The Duchenne Registry
Contact	Ann Martin, MS, CGC
Phone	888-520-8675
Email	coordinator@duchenneregistry.org
Status	Recruiting
Phase
Start date	October 2007
Completion date	October 2047

View Details

See also
Status	Clinical Trial	Phase
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