CureDM circulated the survey above with the aim of better understanding the community that we support, and to assist in making that support more effective, particularly within clinics and amongst the medical professionals.
Results have been gathered and presented at multiple worldwide conferences to raise awareness for the UK community, whilst supporting clinicians, researchers and of course the Charity.
The survey is anonymous and therefore not traceable to any responder. All published findings are shared below, and can be used to help support the DM community where necessary.
The survey is ongoing, with data being interpreted and presented at conferences and events, to give an up to date snapshot of the UK DM community.
This is a CureDM Charity survey. We hope the results will inspire and support current and ongoing research, raising the voice of our UK Community and including those who may not be able to take part in current trials.
August 2025: Patient reported illnesses and hospital admissions for Congenital and Childhood onset Myotonic Dystrophy Type 1 over a 12month period.