Public and patient involvement (PPI) Initiatives
The Down syndrome Priority Setting Partnership
A Trinity College Dublin and James Lind Alliance Partnership
The DS PSP aims to develop a global Top Ten of research uncertainties determined by the wider Down Syndrome community. This would provide evidence to funders of which health areas need more research.
The scope of the PSP will cover topics such as health issues across the lifespan and ageing, 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 early 2026, and our international Steering Group includes self-advocate/advocate/clinical/research representation from Ireland, UK, Jordan, South Africa, Bangladesh, Pakistan, Sri Lanka, China, Australia, Kenya, Mexico and the US. The SG meets every 6 weeks, and it is currently developing a global survey that we will share internationally to develop our Top 10 list. International advocacy organisations such as NDSS, DSSK, DSI, and DS Intl have partnered with us and will assist in disseminating the survey.
Core Team:
- Lead: Professor Eleanor Molloy
- Co-Investigator: Dr Robert McCarthy
- Co-Investigator: Ms Beth Corcoran
- Co-Investigator: Toto Anne Gronlund
Who are the DS PSP partners?
The HAPPY Programme
The HAPPY programme is a health literacy programme that has been devised for teenagers with Down syndrome in collaboration with teenagers at The Down Syndrome Centre. Its objective is to inform young teens with Down Syndrome about current aspects of health research and to give them the language and learning tools to help maintain their own health and to self-advocate in terms of management of their health.
The in-person programme consists of a series of workshops that deliver learning in the following areas that are relevant to people with Down syndrome: An overview of the anatomy, the immune system, sleep, brain health, oral health, exercise for health. We hope to make the programme available to other regions.
Down Syndrome Core Outcomes
This project will establish a standard set of key outcomes for research on children and young people with Down syndrome that can be compared across different studies.