RecruitingACTRN12617000690358

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

Sponsor

Save Our Sons Duchenne Foundation

Enrollment

1,000 participants

Start Date

Jun 1, 2017

Study Type

Observational

Conditions

carriers of Duchenne or Becker muscular dystrophy (asymptomatic)manifesting carriers of Duchenne Becker muscular dystrophy

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

Sex: Both males and females

Plain Language Summary

Simplified for easier understanding

The Duchenne Registry Australia is an online database that helps connect people with Duchenne or Becker muscular dystrophy — two genetic conditions that cause progressive muscle weakness — with clinical trials and research studies. It also collects valuable information to help doctors and researchers improve care and find treatments. You may be eligible if: - You have been diagnosed with Duchenne muscular dystrophy, Becker muscular dystrophy, or are a female carrier - Any age is welcome You may NOT be eligible if: - You have a different type of muscular dystrophy (such as limb-girdle muscular dystrophy) Talk to your doctor about whether this trial might be right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

Interested in this trial?

Get notified about updates and connect with the research team.

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)

ACT,NSW,NT,QLD,SA,TAS,WA,VIC, Australia

View Full Details on ANZCTR

For the most up-to-date information, visit the official listing.

Visit

ACTRN12617000690358

Related Trials