- 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 received ethical approval from the Office for Research Ethics Northern Ireland (ref 13/NI/0159, Oct. 2013) and have up to date (2016) Data Access Agreements with all five Health and Social Care Trusts as well as with Business Service Organisation and Northern Ireland Statistics and Research Agency.
Cerebral Palsy: Implications for Practice
Dates: 11 November, 2016.
This conference aims to address areas of interest for professionals delivering health services in the community for children and young people with a diagnosis of CP. It includes talks by local and national experts. The opening speaker will be Mrs Fionnuala McAndrew, Director of Social Care and Children, Health and Social Care Board. Dr Claire Lundy and her team, Dr Brona McDowell, Julia Maskery and Tina Weston, will present the work they have carried out to set up and delivery a Regional Tertiary Neurodisability service. Sheila McNeill will discuss the development of Regional Physiotherapy Care Pathway in Northern Ireland. Local Community Paediatricians will present results from clinical audits they have conducted with the support of the Northern Ireland CP Register. There will also be national experts with Dr Neil Wimalasundera (consultant in the Neurodisability department in Great Ormond Street Hospital), who will be talking about eating and drinking difficulties in Neurodisability; Dr Karen Horridge ( Disability Paediatrician at Sunderland Health Care NHS Foundation and Chair of the British Academy of Childhood Disability) will discuss “Disability Matters”, an innovative suite of free resources to support those who work, volunteer or engage with disabled children and young people and their families. Finally, Professor Allan Colver (Community Child Health and Strategic Research Advisor at Newcastle University, Honorary Consultant Paediatrician at Northumbria Health Care NHS Foundation Trust) will present results from the Transition study, a project focused how health services can best contribute to facilitating successful transition of young people with complex health needs from childhood to adulthood.
The programme can be accessed via this link.
If you would like to know more about the progress of this project, please contact us (telephone: 028 9097 1616; email: NICPR@qub.ac.uk).