Important facts about The DMD 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 DMD Registry, except for the purposes listed

  • No information will be given to insurance or related companies

  • Any decision whether to join The DMD 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 GDPR (May 2018), notification has been made of the purposes of The DMD Registry to the Information Commissioner Office.

  • Any research that uses The DMD Registry must have been passed by a medical ethics authority (e.g. NRES [National Research Ethics Service]) in England, working closely with authorities in Scotland, Wales and Northern Ireland that is regulated by the EU Clinical Trials Directive 2001/20/EC, 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.

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