To celebrate World FSHD Day, Professor Giorgio Tasca and the John Walton Muscular Dystrophy Research Centre (JWMDRC) held the second annual FSHD Engagement Day, that took place in Newcastle upon Tyne on September 25, 2025.
This event was open to individuals living with Facioscapulohumeral Muscular Dystrophy (FSHD), as well as their families and carers across the North-East of England to connect with others in the community, share experiences, and hear directly from experts in the field.
Newcastle University and Duchenne UK are developing patient-centred resources for Duchenne Muscular Dystrophy in PaLaDIn, to facilitate fair and equitable access to trials and speed up the development of effective treatments and care. The resources include:
- Clinical Trial Finder (CTF) to identify research opportunities
- Central Recruitment Database (CRD) to enable recruitment
These two resources will inform the development of the Interactium® data platform that is being developed as part of the PaLaDIn project.
Partners from Newcastle University attended the FSHD Engagement Day to hear from those in the FSHD community, to ensure that these resources meet their needs. Part of the event included a session involving a poll of attendees to ask them a range of questions about FSHD and their opinion on priority areas.
The session started by asking the attendees what they thought the main priorities are for the FSHD patient community. Participant responses showed that the most common themes were research, access to research & support and communication. When asked what issues attendees thought the FSHD community face regarding research and access to clinical trials, the top two responses from the 24 people in attendance were “Not enough clinical trials” and “Don’t find out about clinical trials.”
During the afternoon session, attendees listened to a presentation providing an overview of the CRD and CTF, that are currently available and providing support to the DMD community. Attendees were asked if they thought people with FSHD would benefit from having a CRD and CTF designed specifically for their patient community. 87% responded that they would “definitely” benefit and 13% responded, “maybe, but I need to know more.” When asked if they would be interested in registering their details in a CRD to be informed and potentially participate in research for FSHD and to be kept up to date about research opportunities, 85% of respondents indicated that they would.
The insights gathered from this engagement day will directly inform the development of FSHD-specific toolkit to inform the possible development of resources to be included within the Interactium®.
