PaLaDIn coordinator, Parent Project APS, held their 22nd International Conference on Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD) between 28th of February and 2nd of March 2025 in Rome. This event brought together over 600 people from over 25 countries including patients, families, volunteers, patient advocacy associations, clinicians, researchers and pharmaceutical companies from across the DMD and BMD community. Not only did the conference feature an informative scientific program, but it also provided an excellent opportunity for patients and their families to come together and socialise.
Alongside the workshop, Parent Project held a workshop focused on patient input in drug development and Health Technology Assessment (HTA) processes. The workshop was attended by 27 people from DMD and BMD patient advocacy organisations, across 12 different countries. The programme included expert speakers from C-PATH, Duchenne UK, PPMD and the University of Milan. Discussions between attendees and speakers throughout the workshop highlighted shared interest in the issues raised around regulatory decision making and the importance of understanding different experiences in different countries.
Becca Leary and Joanne Lee from PaLaDIn partner Newcastle University presented PaLaDIn and explained how the Interactium data platform could be used to support health care and regulatory decision making. During the workshop we carried out some polling questions to help us better understand if and why patients may want to share their healthcare data to support health care decision making. The majority of participants felt that it’s important for patients to share their healthcare data to support healthcare decision making. When asked why patients may wish to contribute their data, 82% of participants who completed the polling survey said that they would share their data to improve the quality of their care or their child’s care and to help others with the same disease. The insights gained in this workshop will support the development of tools and resources within the PaLaDIn consortium. Parent Project Aps will be producing a report on the workshop, which we will share when available.
