The Duchenne Registry

The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT02069756

Enrollment

10000

Registered

2014-02-24

Start date

2007-10-01

Completion date

2047-10-01

Last updated

2026-05-08

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Becker Muscular Dystrophy, Duchenne Muscular Dystrophy, Dystrophinopathy, Dystrophinopathy Female Carrier, Dystrophinopathy Symptomatic Female Carrier

Keywords

Duchenne, Becker, Muscular Dystrophy

Brief 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.

Detailed 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 clinical trials and research studies.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

Inclusion criteria

* Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry.

Exclusion criteria

* Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).

Design outcomes

Primary

Measure	Time frame	Description
Genetic variant	Registrants are requested to update their medical history every 6-12 months, and they will be followed throughout their lifetime.	Genetic variant data is collected by patient report and verified by curation/review of genetic test report when provided. Genetic test report is requested for each registrant and is required for participation in global DMD (TREAT-NMD) registry.

Secondary

Measure	Time frame	Description
Ambulation status	Registrants are requested to update their medical history every 6-12 months, and they will be followed throughout their lifetime.	Ambulation status is assessed from several questions about mobility, ability to sit and stand, use of assistive devices, and age at full time wheelchair use.

Countries

United States

Contacts

CONTACTAnn Martin, MS, CGC

coordinator@duchenneregistry.org888-520-8675

CONTACTLauren Bogue, MS, CGC