MDI Supports New Research into the Transition to Adulthood for Young People with DMD

Muscular Dystrophy Ireland (MDI) is delighted to be co-funding a new research project aimed at improving support for young people with Duchenne Muscular Dystrophy (DMD) as they transition to adulthood.

Dr Michelle Spirtos, Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, has been awarded €140,000 for the Supporting Transition to Adulthood Resources for young people with Duchenne Muscular Dystrophy (STAR DMD) project, which will be carried out in partnership with MDI.

The award has been made through the HRCI-HRB Joint Funding Scheme, a partnership between the Health Research Board (HRB), Health Research Charities Ireland (HRCI) and participating health research charities, with MDI providing co-funding for the STAR DMD project.

Supporting the transition to adulthood

DMD is a progressive genetic neuromuscular condition that causes loss of muscle function. Advances in medical care have significantly increased life expectancy for people with DMD, but ensuring young people are supported as they move from adolescence into adult life remains a significant challenge.

The 24-month STAR DMD project will bring together young people with DMD, parents and researchers to co-create and test practical transition resources and life skills programmes. The research aims to help young people build independence, self-advocacy and confidence as they transition to adulthood, while also developing resources to support parents.

Putting lived experience at the centre of the research

Young people with DMD and parents will be directly involved throughout the project, including as members of the Steering Group and as paid members of the research team. Public and Patient Involvement (PPI) accounts for 12.5% of the overall project budget.

The project will bring together young people with DMD and their families, MDI, Children's Health Ireland, clinical and advocacy professionals, international partners and people with lived experience to help ensure the research outputs are relevant, practical and sustainable.

Dr Michelle Spirtos said:

“We are thrilled to receive this award in partnership with Muscular Dystrophy Ireland (MDI). Young people with Duchenne Muscular Dystrophy (DMD) are living longer, but transition services guiding adolescents into adult life have not kept pace.

“STAR DMD directly responds to a research priority theme identified in Muscular Dystrophy Ireland's strategic plan. Our team includes young people with DMD and parents as paid members of the research team, clinician and advocacy professionals and international experts with lived experience and research expertise.

“We will co-create and test programmes and resources to support the transition to adulthood for young people with DMD and to support parents in parenting during this critical life course transition. The active involvement of MDI and all key stakeholders guarantees that our research outputs will have a sustainable impact on building independence, self-advocacy, social confidence and successful transitions for young people.”

The project also has the potential to inform transition supports for young people living with other neuromuscular conditions.

MDI is pleased to support this research through the HRCI-HRB Joint Funding Scheme and to contribute to research that responds directly to priorities identified by the DMD community.