Searching for a cure, Improving lives

The DMD Registry

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The UK Duchenne Muscular Dystrophy Registry (the Registry) was established by Action Duchenne Ltd (formerly Parent Project UK Ltd) with a Registry Manager appointed and administered by a Curator.

The Registry acts as a database for all patients who have been diagnosed with Duchenne or Becker Muscular Dystrophy and female carriers.  Participants are required to give consent before registering and also to complete a Medical Release Form (consent form) to enable Action Duchenne to contact clinicians and geneticists for medical and genetic information.  Participants are also required to read the Terms and Conditions carefully when registering and to ask any questions before making a decision whether or not to participate.

Registration and access is only authorised to people who are registered with a clinician in their country of residence because they have been diagnosed as having either Duchenne or Becker Muscular Dystrophy, are a carrier of a variant in the Dystrophin gene or are the parent or guardian of a child with a variant in the Dystrophin gene.

 

Purpose of the Registry

  • To develop and encourage the development of more research into Duchenne and Becker Muscular Dystrophy
  • Facilitate research by collecting relevant data and making it available for specified research projects
  • Use the information provided to understand the disease better
  • Establish contact between clinicians, other health professionals, researchers and Registry participants
  • Enhance clinicians’ and other health professionals’ ability to deliver treatments for this disease

 
Important Facts about the Registry

  • Participation is totally voluntary
  • You may ask that your (or your child’s) data be removed or irreversibly anonymised at any time
  • No one can find out if you (or your child) are in the Registry, except for the purposes listed
  • No information will be given to insurance or related companies
  • Any decision whether to join the Registry or to withdraw from it will not change your (or your child’s) medical care or legal rights
  • Authorised researchers will look at your (or your child’s) anonymised data for the purposes of research projects which have been approved by Action Duchenne Ltd and the Registry Steering Committee
  • Authorised health professionals will look at data on your (or your child’s) condition for a specific purpose which will benefit your (or your child’s) treatment and/or the treatment of other participants
  • Your (or your child’s) personal details will not be shared with any authorised researcher, authorised health professional or any other third party without your consent. In most circumstances information will be anonymised
  • The Registry is regulated by the Data Protection Act (1998) and notification has been made of the purposes of the Registry to the Information Commissioner
  • Any research that uses the Registry must have been passed by a medical ethics authority (e.g. COREC in the UK) that is regulated by the EU Clinical Trials Directive 2001, or a non-medical ethical authority (e.g. a university ethical committee) that has been approved by our Steering Committee
  • If the medical or genetic data for you (or your child) changes after registration you will have to complete and return a new Medical Release Form so that we can obtain this data from your clinician or geneticist. This form will be available on request or can be downloaded from the website.

 
Benefits of Participation

Joining the Registry may give you or your child the opportunity to participate in research studies. If you are enrolled, you will receive the Action Duchenne newsletter at least once a year about Registry activities and research advances in Duchenne Muscular Dystrophy.

 

Eligibility

Registration and access is only authorised to people who are registered with a clinician in their country of residence because they have been diagnosed as having either Duchenne or Becker Muscular Dystrophy, are a carrier of a variant in the Dystrophin gene or are the parent or guardian of a child with a variant in the Dystrophin gene.

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