- The NICPR is a confidential record of children with cerebral palsy in Northern Ireland.
- The NICPR is held at Queen's University Belfast and funded by the Public Health Agency (NI)
- We have data access agreements with the 5 Health & Social Care Trusts to maintain NICPR
- Contact from parents and people with cerebral palsy is particularly welcome.
We have recently received updated ethical approval for the NICPR from the Office for Research Ethics Northern Ireland (ref 13/NI/0159, October 2013)
STUDY RESULTS – Participation and quality of life
In 2004/05 over 800 young people and their parents took part in Sparcle - a study about participation and quality of life among 8-12 year olds with cerebral palsy in 9 regions of Europe, including Northern Ireland. We had one of the best response rates of all the countries with more than 100 families from Northern Ireland taking part! Click HERE to read the results from Sparcle1.
We have now finished following up all the children into adolescence and soon we will be publishing our findings on Sparcle2. Read more about the SPARCLE study.
Funded by the Wellcome Trust.
NEW STUDY - Transitions from child to adult health services
We want to find out about the experiences of young people with cerebral palsy in relation to changing from child health services to adult services and how things could be improved. If you are interested in taking part, are aged 14-18 years and live in Northern Ireland - please contact us (telephone: 028 9063 5045; email: firstname.lastname@example.org). Here is some more information for YOUNG PEOPLE and for PARENTS.
Funded by National Institute of Health Research (NIHR) in collaboration with Newcastle University, Northumbria & Birmingham NHS Trust.