The Duchenne Registry Australia
The Duchenne Registry Australia - a patient registry to collect information about Australians with Duchenne or Becker muscular dystrophy and female carriers of these conditions
Save Our Sons Duchenne Foundation
1,000 participants
Jun 1, 2017
Observational
Conditions
Summary
The Duchenne Registry Australia is an online, patient-report registry for individuals with Duchenne and Becker muscular dystrophy and carrier females. The purpose of The Duchenne Registry Australia 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 registry is a valuable resource for clinicians and researchers in academia and industry, allowing access to a de-identified, aggregate dataset provided by patients and their families—information that is vital to advances in the care and treatment of Duchenne.
Eligibility
Inclusion Criteria1
- Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry.
Exclusion Criteria1
- Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).
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Interventions
The Duchenne Registry Australia is an online patient/caregiver self-report registry collecting data about Australians with Duchenne and Becker muscular dystrophy. Longitudinal data including demographics, disease manifestations, healthcare utilisation, and quality of life of individuals with Duchenne and Becker muscular dystrophy (DBMD) and carriers of these conditions are collected, curated, and maintained in accordance with Australian Privacy Laws and Guidelines. Participants explicitly permit the collection and use of their data through an online consent or parental permission process and form. Patients’ anonymised data are used to facilitate research, speed the development of and recruitment for clinical trials, and generate potential research hypotheses. In addition, registrants are informed about clinical trials, clinical research, and social/behavioural research studies that may be of interest; they then choose whether to seek additional information and/or to participate.
Locations(1)
View Full Details on ANZCTR
For the most up-to-date information, visit the official listing.
ACTRN12617000690358