Principal investigators

Dr Claire Kerr (Queen's University Belfast, P.I.), Ms Helen Savage (NICPR Public Representative) & Dr Karen McConnell (Queen's University Belfast, Research Fellow).

Funding

Public Health Agency (PHA) & National Institute for Health Research (NIHR), 2018-19.

Outline

The Northern Ireland Cerebral Palsy Register (NICPR) is one of 10 ‘test-bed’ projects that will test the NIHR National Standards for Public Involvement in Research. This will involve working with NIHR and PHA to help establish if the NIHR standards work in practice and to share what is learnt from using the standards. As a ‘test-bed’ the NICPR will (i) create a public involvement (PI) group (persons with CP and their family, carers and friends), (ii) collaboratively determine terms of reference, activities and training needs of this PI group, (iii) develop jargon-free communication methods to meet the needs of different audiences, and (iv) record, monitor and evaluate our PI activity. Download a copy of the Standards for Public Involvement in Research.

Principal investigators

Ms Mary-Elaine Calvert supervised by Drs Claire Kerr and Oliver Perra (Queen's University Belfast).

Funding

Department for the Economy (Northern Ireland), PhD studentship 2017-2010.

Outline

This PhD will establish the nature and extent of sleep disturbances experienced by children with cerebral palsy; explore the impact of disturbed sleep on the family unit; and investigate the use of prescribed medications and non-pharmacological interventions to reduce sleep disturbances in children with cerebral palsy. 

Principal investigators

Drs Oliver Perra and Claire Kerr (Queen's University Belfast, P.I.), Dr Karen McConnell (Queen's University Belfast, Research Fellow) & SCPE collaborators.

Funding

Public Health Agency & European Union, 1998-present.

Outline

The SCPE network is a collaboration of registers of children with cerebral palsy involving 24 active centres in 20 countries, including the NICPR. One of the aims of the SCPE network is to monitor trends in the prevalence of cerebral palsy over time and by severity. Visit the SCPE website or download a copy of SCPE privacy statement.

Principal investigators

Dr Elena Guiomar Garcia Jalon (Queen's University Belfast, P.I.), Dr Oliver Perra (Queen's University Belfast, co-applicant) & Dr Anna Gavin, Dr Dermot O’Reilly & Prof Allen Thurston (Queen’s University Belfast, collaborators).

Funding

Public Health Agency & Improving Children’s Lives, 2015-20.

Outline

This study is investigating the prevalence of pain in cerebral palsy using information on prescribed pain medication.

Principal investigators

Dr Oliver Perra (Queen's University Belfast, P.I.), Prof Judith Rankin (University of Newcastle) & SCPE Network.

Funding

Queen’s University Belfast, 2015-18

Outline

This study is investigating the prevalence of cerebral palsy among single and multiple births between 1990-2007 using data provided by the multi-centre Surveillance of Cerebral Palsy in Europe (SCPE) network.

Principal investigators

Professor Allan Colver (Newcastle University, P.I.) and nine other investigators, assisted by collaborators and research associates across the UK, including Dr Mark Linden and Prof Maria Lohan (Queen's University Belfast).

Funding

National Institute for Health Research, Programme Grants for Applied Research scheme, 2012-17.

Outline

The Transition Programme was a 5-year programme of research examining how health services can contribute most effectively to the successful transition of young people with complex health needs from childhood to adulthood. Visit the Transition Study website for more information. 

Principal investigators

Professor Allan Colver (Newcastle University, P.I.) with Dr Jackie Parkes (Queen's University, Local Co-ordinator), Mrs Ann Madden (Queen's University, Local Research Associate) and seven other Local Co-ordinators and Research Associates from other EU countries including France, Sweden, Italy, Denmark and Republic of Ireland.

Funding

EEC Research Framework 5 (Quality of Life), 2004-05 (SPARCLE 1), 2009-10 (SPARCLE 2).

Outline

SPARCLE 1 investigated the role of ‘environmental factors’ (access, transport, social policy, attitudes, and service arrangements) on participation and quality of life for 8-12 year old children with cerebral palsy of all abilities. SPARCLE 2 reassessing the same children when they were 13-17 years old. Visit the SPARCLE Study website.

Principal investigators

Mrs Karen McConnell supervised by Dr Claire Kerr (Queen's University Belfast) & Prof Linda Johnston (Queen's University Belfast)

Funding

Department for Employment & Learning, PhD studentship, 2009-12.

Outline

This study investigated assessment of the upper limb in cerebral palsy, upper limb problems from the perspectives of families and therapists, and use of constraint induced movement therapy to treat the upper limb in children with hemiplegic cerebral palsy.

Principal investigators

Ms Elaine McCahey supervised by Dr Jackie Parkes (Queen's University Belfast), Dr Nichola McCullough (Ulster University), and Mrs Ann Madden (Queen's University, Local Research Associate)

Funding

Department for Employment & Learning, PhD studentship, 2009-12. 

Outline

This study described the health of children with cerebral palsy and investigated predictors of stress in their parents. 

Principal investigators

Mr Aidan Cosgrove, Dr Brona McDowell, Dr Claire Kerr (Belfast Health & Social Care Trust, Musgrave Park Hospital), Dr Jackie Parkes (Queen's University Belfast)

Funding

Northern Ireland Research & Development Office, in Recognised Research Group 8 (Trauma and Rehabilitation), 2002-08.

Outline

This study investigated changes in the locomotor abilities of children with ambulant cerebral palsy, aged 4-16 years over time.

Principal investigators

Mrs Collette Donnelly (Royal Belfast Hospital for Sick Children) supervised by Dr Jackie Parkes (Queen's University Belfast) & Dr Brona McDowell & Miss Catherine Duffy (Belfast Health & Social Care Trust, Musgrave Park Hospital).

Funding

Northern Ireland Research & Development Office, Doctoral Fellowship Scheme, 2006-10.

Outline

This study investigated the prevalence of orthopaedic problems (hip dislocation, pelvic obliquity, spinal deformity, orthopaedic-related pain) and their relationship with participation and health in children and young people aged 4-25 years with severe cerebral palsy (GMFCS levels IV and V).

Principal investigators

Professor Helen Dolk (University of Ulster, Principal Investigator) with Dr John Jenkins in collaboration with others including UKCP partners

Funding

Northern Ireland Research & Development Office; Commissioned Programme – Targeting Social Need, 2004-06.

Outline

This study replicated a larger survey based in Great Britain exploring inequalities in pregnancy outcomes.  One of the outcome measures used was cerebral palsy rates and the extent to which they varied by socio-economic indicators across the United Kingdom.

Principal investigators

Professor Jane Hutton (University of Warwick, Principal Investigator) with Dr Karla Hemming and UKCP partners including Dr Jackie Parkes and Professor Helen Dolk

Funding

Medical Research Council (MRC), 2001-05.

Outline

This study utilises the registry data already collected by the UKCP partners to investigate regional and clinical variations in survival among the childhood population with cerebral palsy.

Principal investigators

Ms Jackie Parkes, Dr Helen Dolk, Dr Nan Hill and Dr Michael Donnelly

Funding

Special Fellowship Royal Belfast Hospital for Sick Children; Department of Health and Social Services Northern Ireland, 1994-98.

Outline

This study used the NICPR as a sampling frame to survey the views and experiences of parents with a child with moderate – severe cerebral palsy.