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Care and Trial Site Registry & Action Duchenne survey for Centres

Care and Trial Site Registry & Action Duchenne survey for Centres

Action Duchenne have teamed up with the Care and Trial Site Registry (CTSR), a registry that was established by TREAT-NMD to collect information about care settings and trial site infrastructure in neuromuscular centres around the world. If you work at a centre, kindly fill out (or update your answers to) the standard questions in the CTSR plus the extra page explicitly for Action Duchenne.

To access the Care and Trial Site Registry, please click below and sign in, if you are already registered. Otherwise, please sign up for a new account.

Please go through the questionnaire from top to bottom and answer all the questions (be sure to check the Disease Group ‘NMD’, or you will not see all the questions). The pages under ‘Clinical trial infrastructure’ need only be filled out if you are interested in participating in clinical trials.

Fill in the survey

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News & social

Life and Breath – Planning for power failure guide

July 23rd, 2014

  Our friends at DMD Pathfinders have produced a 7 page guide on worry free breathing

Action Duchenne are recruiting a new Chair of the Board of Trustees

July 15th, 2014

Our current Chair, Kathy Wedell, will be standing down after the annual conference in November

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DMD Pathfinders have produced an important new fact sheet on worry free breathing during power failure.

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