The Down syndrome Priority Setting Partnership

The Down syndrome PSP aims to develop develop a global Top Ten of research uncertainties as determined by the wider Down Syndrome community. This would provide evidence to funders of which health areas need more research.

The International Down Syndrome PSP will identify unanswered questions in Down syndrome by consulting with people with Down syndrome, their carers and support workers, and healthcare professionals, and by partnering with international groups to establish priorities that reflect a global need. The scope of the PSP will cover topics such as health issues across the lifespan and aging, global access to care and clear guidelines, financial impact, daily life, inclusivity in healthcare, employment, and education, independent living, carer well-being, staff training, and basic human rights across various social and geographical settings. 

The project began in January 2026 and our international Steering Group includes self-advocate, advocate, clinical and research representation from Ireland, UK, Jordan, South Africa, Bangladesh, Pakistan, Sri Lanka, China, Australia, Kenya, Mexico and the US. The Steering Group meets regularly, and it is currently developing a survey that we will share internationally to develop our Top 10 list.

Many international advocacy organisations and academic institutions have partnered with us and will assist in disseminating the survey.