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Trial Serve Demo

Our registry is powered by Trial Serve a clincal trial and registry management service. View a range example screenshots from result screens, report screens and data visualisation maps.

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Legal

The DMD Registry operates under a number of UK and EU laws and directives.

Freedom Of Information Act (2000)

“The Freedom of Information (FOI) Act was passed on 30 November 2000. It gives a general right of access to all types of recorded information held by public authorities, with full access granted in January 2005. The Act sets out exemptions to that right and places certain obligations on public authorities.” - NHS FOI Website

UK Charity Laws

Charity Trustees are responsible for controlling the management and administration of a charity. The Charity Commission is the independent regulator of charities in England and Wales. Our job as regulator is to work closely with charities to ensure that they are accountable, well run and meet their legal obligations in order to promote public trust and confidence. - UK Charity Commission

Data Protection Act (1998)

The DPA gives individuals certain rights regarding information held about them. It places obligations on those who process information (data controllers) while giving rights to those who are the subject of that data (data subjects). Personal information covers both facts and opinions about the individual. - Information Commissioner Fact Sheet

Computer Misuse Act (1990) and ammendment (2005)

UK Copy Right Law and EU Copyright Directive

“A harmonised legal framework on copyright and related rights, through increased legal certainty and while providing for a high level of protection of intellectual property, will foster substantial investment in creativity and innovation, including network infrastructure” - EU Copyright Directive

Research Governance Framework and EU Clinical Trials Directive (2001)

“The Research Governance Framework for health and social care defines the broad principles of good research governance and is key to ensuring that health and social care research is conducted to high scientific and ethical standards.” - NHS

“The accepted basis for the conduct of clinical trials in humans is founded in the protection of human rights and the dignity of the human being with regard to the application of biology and medicine, as for instance reflected in the 1996 version of the Helsinki Declaration.” - EU Clinical Trials Directive (2001)


Action Duchenne

The DMD Registry is sponsored and controlled by Action Duchenne UK Limited (Action Duchenne Ltd), and has been registered under the Data Protection Act (1998).

Treat NMD

The DMD Registry is part of the Treat-NMD Network.

The DMD Registry - Helping to win the race against time