Muscle Biopsy Survey

Are you the caregiver of a child with Duchenne Muscular Dystrophy whose has had a muscle biopsy as part of a clinical trial?

If your answer is yes, we need your help!

This year a group of patients, patient organizations, clinicians, researchers and companies developing drugs for Duchenne came together for a workshop to discuss and evaluate the outcome measures that are currently used in clinical trials.

One of the sessions during the day involved a discussion on muscle biopsies. This session was led by the muscle biopsy working group which included a patient, a representative from a patient organization, clinicians and researchers. During the discussions in that session it was felt that very little data had been collected on the patient perspective on muscle biopsies.

To address this the muscle biopsy working group decided to devise this survey to allow us to better understand your views and look at how we can improve the patient and caregiver experience when carrying out muscle biopsies in clinical trials.  
We hope you will follow the below link and fill out this survey to help us collect this important information. The survey will take between 20 to 40 minutes to complete. The survey is anonymous. The survey will close on the 20th of October. 

Published on 10 April 2017

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