- 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 five Health and 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.
Transiton project - First year update
This project aims to provide evidence which will enable NHS Commissioners and Trusts to facilitate successful transition of young people from child to adult health care services. In England, young people with autistic spectrum disorder, cerebral palsy and diabetes are followed up for four years. In Northern Ireland, only young people with cerebral palsy have been asked to take part with the help of the Northern Ireland Cerebral Palsy Register and clinicians involved in their care across all five Trusts. The total number of participants in the project is 375. There are 109 young people with cerebral palsy in the project and almost half of them are from Northern Ireland.
If you would like to know more about the progress of this project, please contact us (telephone: 028 9063 5045; email: firstname.lastname@example.org). Equally, this is a link to the website of the project TRANSITION.
Funded by National Institute of Health Research (NIHR) in collaboration with Newcastle University, Northumbria & Birmingham NHS Trust.