Oscar winner James Martin is backing a new research project to examine the issues impacting children and adults with Down Syndrome in Northern Ireland.
'My Life with Down Syndrome' is an Ulster University led research project to examine the health, wellbeing and development of people with Down Syndrome. It has been launched ahead of World Down Syndrome Day this Friday, March 21, with the support of acclaimed local actor James Martin, who made history in 2023 as the first person with Down Syndrome to win an Oscar.
Funded over a five-year period by the Department of Health and the Baily Thomas Charitable Fund and run in partnership with the Department for Paediatric Cardiology, Royal Belfast Hospital for Sick Children, the project examines the lifestyle of people with Down Syndrome from birth right through to adulthood, focusing on the 1450 people born with the genetic condition between 1990 and 2023.
Launched on Thursday at Ulster University in Derry, it gets underway with a survey designed to capture the views of people with Down Syndrome, their families and caregivers, about their lifestyle, challenges, and current gaps in care provision: 'My Life with Down Syndrome' Questionnaire.
By examining the issues people with Down Syndrome face, including other illnesses and medical co-morbidities, behavioural and educational challenges, and barriers to employment, the study will produce recommendations and guidelines to inform future health policy, ensuring it better meets the medical, educational, psychosocial and financial needs of people with Down Syndrome, both in Northern Ireland and internationally.
With approximately 45% of those born with Down Syndrome also diagnosed with significant CHD, the study will also evaluate the transformation in outcomes brought about by improved cardiac surgical outcomes for this population.
Supported by the Down Syndrome Association, The Foyle Down Syndrome Trust and Children’s Heartbeat Trust, My Life with Down Syndrome will involve a combination of online surveys, photovoice projects and direct engagement with people with Down Syndrome, their families and carers, to address current deficits.
Professor Frank Casey, Clinical Professor of Paediatric Cardiology, Ulster University School of Medicine, said he hopes this research will lead to improvements in the care and services available for children and adults living with Down Syndrome, ultimately improving their quality of life..
He added: “Although outcomes for this population have improved significantly in the past generation, there remains a deficit in medical literature and wider care provision for those with Down Syndrome. We believe that by giving the Down Syndrome population, along with their families and carers, an opportunity to be actively involved in research related to their care we can better educate clinicians and policymakers on the realities of being or raising a person with Down Syndrome, allowing the creation of evidenced-based care guidelines.
"Today we also launch an important phase of the study with a questionnaire for families of people with Down Syndrome born between 1990 and 2023, to learn as much as we can about the lives of all those affected and identify improvements needed.
“Thank you to our project patron, the inspiring James Martin, for his support in launching My Life with Down Syndrome and our research funders and partners the Baily Thomas Charitable Fund, Department of Health, Department for the Economy, Royal Belfast Hospital for Sick Children, Down Syndrome Association, Foyle Down Syndrome Trust and the Children’s Heartbeat Trust.”
James said: “I was delighted that this research was funded and I am glad and happy to be the Patron. I wish Frank and his team all the best going forward.”
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