Gözüm S., Wells J.(Yürütücü), ASİ E.
TÜBİTAK - AB COST Projesi , 2022 - 2026
There is poor understanding of cancer prevention among people with intellectual disabilities. CUPID will
establish a research agenda and knowledge base to improve this in the European Union and beyond.
Among the European intellectual disabilities population, many cancer diagnoses are symptomatic
presentations following on from behavioural distress or physical changes. Cancer deaths among this
population occur up to 20 years earlier than the general population. Factors influencing unequal health
status and premature death amongst people with intellectual disabilities warrant further investigation. Article
25 of the United Nations Convention on the Rights of People with Disabilities acknowledges their right to
healthcare. The Council of Europe Disability Strategy 2017-2023 recognises health systems failure to
engage with and include people with disabilities. Many external and internal factors influence healthcare
engagement among this population resulting in long- term health consequences. External factors include
diagnostic overshadowing, paternalism and cancer screening delays during the COVID-19 pandemic. For
the person challenges with communication, cognitive ability and decision-making capacity influence
healthcare engagement. It is timely to develop collaborative links with the EU research and service provider
communities to reach consensus on addressing these challenges. CUPID establishs active working
partnerships with academics, researchers, non-governmental organisations, carers, people with intellectual
disabilities and policy makers. CUPID will establish a research agenda and exchange information regarding
cancer prevention in the intellectual disability population. Short term scientific exchanges, training schools,
conferences and seminars using a hybrid approach will explore highlighted issues. Other network funding
streams will not support this kind of activity.