Update and News regarding the Patient Pharma Survey!March 8, 2022
The important Patient Preference study that we have recently announced between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University is nearly ready to be published all around Europe.
As you may be aware, there is a growing interest from several pharma companies to run clinical trials in FSHD in Europe.
FSHD Europe is working with the Pharmaceutical Industry to ensure that when trials are developed, they are designed and organised in a way to maximise patient involvement and participation. In order to achieve this, we are conducting an anonymous, large-scale survey of patients across Europe to find out what they want from a Clinical Trial and what would encourage them to participate.
FSHD Europe are providing funding to the JWMDRC to develop, manage and analyse this survey. The survey will include questions about the patient’s condition and how they currently manage it. It will also include some questions to gain insight into the FSHD community’s thoughts and opinions on clinical trials. The survey will be translated into Dutch, English, French, German, Italian and Spanish.
We hope this will be far reaching in the FSHD community across Europe and are keen for as many patients and caregivers to be given the opportunity to participate as possible.
We are committed to sharing the information we learn from the survey with the FSHD community. The survey will be available to complete online in April 2022. Please don’t hesitate to contact us if there is any further information you need to publicise and promote the survey.