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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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Prosensa Patient Group Update – PRO044, PRO045, PRO053 and other updates

August 18th, 2014

Prosensa is working towards long-term access to drisapersen Dear Patient Group Representative, As previously communicated,

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