The following publications include research from the NICPR team and other studies where the Register was a collaborator over the past 10 years. Reports that the NICPR has contributed to are published at the bottom of the page. You can find archived articles and reports prior to 2013 listed here.

2023

• Arnaud C, Ehlinger V, Perraud A, Kinsner‐Ovaskainen A, Klapouszczak D, Himmelmann K, Petra M, Rackauskaite G, Lanzoni M, Platt MJ, Delobel‐Ayoub M. Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network. Paediatric and Perinatal Epidemiology. 2023 Feb 1.
• Horber V, Andersen GL, Arnaud C, De La Cruz J, Dakovic I, Greitane A, Hensey O, Himmelmann K, Hollody K, Horridge K, Künzle CT, Marcelli M, Ortibus E, Papavasiliou A, Perra O, Platt MJ, Rackauskaite G, Sigurdardottir S, Gergeli AT, ... Sellier E. Prevalence, clinical features, neuroimaging, and genetic findings in children with ataxic cerebral palsy in Europe. Neurology. 2023. https://doi.org/10.1212/WNL.0000000000207851
• Ryan JM, Walsh M, Owens M, Byrne M, Kroll T, Hensey O, Kerr C, Norris M, Walsh A, Lavelle G, Fortune J. Transition to adult services experienced by young people with cerebral palsy: A cross‐sectional study. Developmental Medicine & Child Neurology. 2023 Feb;65(2):285-93.

 2022

• Kerr C, McConnell K, Savage H, Acheson M. Implementing public involvement standards in cerebral palsy register research. Frontiers in Rehabilitation Sciences. 2022 Nov 17;3:903167. Epub 2022 Nov 17. doi: 10.3389/fresc.2022.903167 
• Ryan JM, Walsh M, Owens M, Byrne M, Kroll T, Hensey O et al. Unmet health needs among young adults with cerebral palsy in Ireland: a cross-sectional study. Journal of Clinical Medicine. 2022 Aug 18;11(16):4847. doi: 10.3390/jcm11164847
• McIntyre S, Goldsmith S, Webb A, Ehlinger V, Julsen Hollung S, McConnell K et al. Global prevalence of cerebral palsy: a systematic analysis. Developmental Medicine and Child Neurology. 2022 Dec 1;64(12):1494-1506. Epub 2022 Aug 11. doi: 10.1111/dmcn.15346
• Manikandan M, Cassidy E, Cook G, Kilbride C, Kerr C, Walsh A et al. Access, use and satisfaction with physiotherapy services among adults with cerebral palsy living in the United Kingdom and Ireland. Disability and Rehabilitation. 2022 Jul 4. Epub 2022 Jul 4. doi: 10.1080/09638288.2022.2087760
• Manikandan M, Foley K, Gough J, Harrington S, Wall É, Weldon F et al. Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher. Frontiers in Rehabilitation Sciences. 2022 Jun 3;3:874012. doi: 10.3389/fresc.2022.874012
• Manikandan M, Casey C, Doyle A, Kerr C, Walsh A, M Ryan J. Use of health services and unmet needs among adults with cerebral palsy in Ireland. Developmental Medicine and Child Neurology. 2022 Apr 8. Epub 2022 Apr 8. doi: 10.1111/dmcn.15233 
• Kerr C, Novak I, Shields N, Ames A, Imms C. Do supports and barriers to routine clinical assessment for children with cerebral palsy change over time? A mixed methods study. Disability and Rehabilitation. 2022 Mar 26. Epub 2022 Mar 26. doi: 10.1080/09638288.2022.2046874 
• McConnell K, Topley D, McKeown J, Kerr C. Acceptability and feasibility of a vestibular nerve stimulation headset protocol in children with cerebral palsy. BMC Pediatrics. 2022 Jan 11;22:34. Epub 2022 Jan 11. doi: 10.1186/s12887-021-03093-1
• Kent L, Kerr C, McConnell K, Perra O, Eastwood K-A. Linkage of routinely-collected maternity data with a cerebral palsy register: comparison of baseline maternal characteristics in offspring with and without cerebral palsy. Int J Popul Data Sci. 2022;7(3). Selected for Oral Presentation at International Population Data Linkage Conference Sept 2022.
• Kent L, Kerr C, McConnell K, Perra O, Eastwood K-A. Linkage of routinely-collected maternity data with a cerebral palsy register: matching success and temporal assessment of data quality and maternal characteristics. Int J Popul Data Sci. 2022;7(3). Selected for Oral Presentation at International Population Data Linkage Conference Sept 2022.

2021

• Cummins D; Kerr C; McConnell K; Perra O. "Risk factors for intellectual disability in children with spastic cerebral palsy" Arch Dis Child, 2021. Available at: https://adc.bmj.com/content/early/2021/03/16/archdischild-2020-320441 
• Sellier E; Goldsmith S; McIntyre S; Perra O; Rackauskaite G; Badawi N; Fares A, Smithers-Sheedy H; SCPE and ACPR Groups. "Cerebral palsy in twins and higher multiples: A Europe-Australia population-based study" Dev Med Child Neurol, 2021. Available at: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.14827 
• McConnell K; Livingstone E; Perra O; Kerr C. "Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland" BMJ Open 2021 11: 1. Available at: http://dx.doi.org/10.1136/bmjopen-2020-044614
• Kent L, Cleland I, Saunders C, Ennis A, Finney L, Kerr C. A Systematic Multidisciplinary Process for User Engagement and Sensor Evaluation: Development of a Digital Toolkit for Assessment of Movement in Children With Cerebral Palsy. Frontiers in Digital Health. 2021 Jun 24;3:692112. Epub 2021 Jun 24. doi: 10.3389/fdgth.2021.692112 
• Kent L, Cardwell C, Young I, Eastwood KA. Trends in maternal body mass index in Northern Ireland: a cross-sectional and longitudinal study. Family medicine and community health. 2021;9(4).
• Meehan E, Gallagher AL, Ryan JM, Kerr C, O'Sullivan R, Galvin R et al. Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review [version 1; peer review: 1 approved]. HRB Open Research. 2021 Sep 28 

2020

• Perra O; Rankin J; Platt MJ; Sellier E; Arnaud C; De La Cruz J; Krageloh-Mann I; Sweet DG; Bjellmo S. "Decreasing cerebral palsy prevalence in multiple births in the modern era: a population cohort study of European data" Arch Dis Child, 2020. Available at: https://fn.bmj.com/content/fetalneonatal/early/2020/08/25/archdischild-2020-318950.full.pdf
• Garcia Jalon G; Merrick H; Colver A; Linden M. "Did previous involvement in research affect recruitment of young people with cerebral palsy to a longitudinal study of transitional health care?" BMJ Open, 2020. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422630/
• Carter B; Bennett CV; Jones H; Bethel J; Perra O; Wang T; Kemp A. "Healthcare use by children and young adults with cerebral palsy" Dev Med Child Neurol, 2020. Available at: https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14536
• Ryan JM, Fortune J, Walsh A, Norris M, Kerr C, Hensey O et al. Transition from child to adult health services for young people with cerebral palsy in Ireland: a mixed-methods study protocol. BMJ Open. 2020 Dec 22;10(12):e041425. doi: 10.1136/bmjopen-2020-041425
• Manikandan M, Walsh A, Kerr C, Walsh M, M Ryan J. Health service use among adults with cerebral palsy: a mixed methods systematic review protocol. BMJ Open. 2020 Aug 30;10(8):e035892. doi: 10.1136/bmjopen-2019-035892
• Imms C, Kerr C, Bowe SJ, Karlsson P, Novak I, Shields N, Reddihough D, Best Service Best Time Author Group. Efficacy of a knowledge translation approach in changing allied health practitioner use of evidence-based practices with children with cerebral palsy: a before and after longitudinal study. Disability and Rehabilitation. 2021 Dec 4;43(25):3592-605.
• Fortune J, Murphy P, Merchant N, Kerr C, Kroll T, Walsh A et al. Transition from child-centred to adult-oriented healthcare systems for young people with neurodisability: a scoping review protocol. HRB Open Research. 2020 Sep 4;3:61. doi: 10.12688/hrbopenres.13095.1

2019

• O'Connor B, Kerr C, Shields N, Adair B, Imms C. Steering towards collaborative assessment: a qualitative study of parents' experiences of evidence-based assessment practices for their child with cerebral palsy. Disability and Rehabilitation. 2019 Jun 23. Epub 2019 Jun 23. doi: 10.1080/09638288.2019.1629652 

 2018

• Goldsmith S; Garcia Jalon G; Basawi N; Blair E; Garne E; Gibson C; McIntyre S; Scott H; Smithers-Sheedy H; Andersen GL. “Comprehensive investigation of congenital anomalies in cerebral palsy: protocol for a European-Australian population-based data linkage study (The Comprehensive CA-CP Study)”BMJ Open, 2018, Vol 8. Available at: https://bmjopen.bmj.com/content/8/7/e022190
• Kerr C, Bowe S, Miyazaki K, Imms C. Psychometric Evaluation of the 'Evidence Based Practice Competencies Questionnaire - Cerebral Palsy'. Physical and Occupational Therapy in Pediatrics. 2018 Feb 5;1-11. Epub 2018 Feb 5. doi: 10.1080/01942638.2017.1420002 
• Morris A, Imms C, Kerr C, Adair B. Sustained participation in community-based physical activity by adolescents with cerebral palsy: a qualitative study. Disability and Rehabilitation. 2018 Jul 10. Epub 2018 Jul 10. doi: 10.1080/09638288.2018.1486466 

 2017

• Kolehmainen N; McCafferty S; Maniatopoulos G; Vale L; Le-Couteur AS; Colver A; on behalf of the Transition Collaborative Group. “What constitutes successful commissioning of transition from children’s to adults’ services for young people with long-term conditions and what are the challenges? An interview study”BMJ Paediatrics Open, 2017, Vol 1. Available at: http://dx.doi.org/10.1136/bmjpo-2017-000085
• McDowell BC; Duffy C; Lundy C. “Pain report and musculoskeletal impairment in young people with severe forms of cerebral palsy: A population-based series” Research in Developmental Disabilities, 2017, Vol. 60, pp. 277-284. Available at: https://doi.org/10.1016/j.ridd.2016.10.006 
• O'Connor B, Kerr C, Shields N, Imms C. Understanding allied health practitioners’ use of evidence-based assessments with children with cerebral palsy: A mixed methods study. Disability and Rehabilitation. 2017 Sep 6;41(1):53. Epub 2017 Sep 6. doi: 10.1080/09638288.2017.1373376 

 2016

• Farre A; Wood V;  McDonagh JE; Parr JR; Reape D; Rapley T; on behalf of the Transition Collaborative Group. “Health professionals’ and managers’ definitions of developmentally appropriate healthcare for young people: conceptual dimensions and embedded controversies” Archives of Disease in Childhood, 2016, Vol. 101(7). Available at: http://dx.doi.org/10.1136/archdischild-2015-309473
• Hislop J; Mason H; Parr JR; Vale L; Colver A; “Views of Young People With Chronic Conditions on Transition From Pediatric to Adult Health Services”Journal of Adolescent Health, 2016, Vol. 59(3), pp. 345-353. Available at: http://dx.doi.org/10.1016/j.jadohealth.2016.04.004

 2015

• Dang VM; Colver A; Dickinson HO; Marcelli M; Michelsen SI; Parkes J; Parkinson K; Rapp M; Arnaud C; Nystrand M; Fauconnier J. “Predictors of participation of adolescents with cerebral palsy: A European multi-centre longitudinal study” Research in Developmental Disabilities, 2015, Vol. 36, pp. 551-564. Available at: https://doi.org/10.1016/j.ridd.2014.10.043
• Colver A; Rapp M;  Eisemann N;  Ehlinger V;  Thyen U; Dickinson HO;  Parkes J;  Parkinson K; Nystrand M;  Fauconnier J;  Marcelli M;  Michelsen SI;  Arnaud C. “Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis” The Lancet, 2015, Vol. 385(9969), pp. 705-716. Available at: http://dx.doi.org/10.1016/S0140-6736(14)61229-0
• Farre A; Wood V; Rapley T; Parr JR; Reape D; McDonagh JE. “Developmentally appropriate healthcare for young people: a scoping study” Archives of Disease in Childhood, 2015, Vol 100(2).Available at: http://dx.doi.org/10.1136/archdischild-2014-306749
• Merrick H;  McConachie H;  Le Couteur A;  Mann K;  Parr JR; Pearce MS;  Colver A and on behalf of the Transition Collaborative Group. “Characteristics of young people with long term conditions close to transfer to adult health services” BMC Health Services Research, 2015, Vol.15. Available at: https://doi.org/10.1186/s12913-015-1095-6

 2014

• McConnell K; Johnston L; Kerr C. “Efficacy and Acceptability of Reduced Intensity Constraint-Induced Movement Therapy for Children Aged 9–11 years with Hemiplegic Cerebral Palsy: A Pilot Study” Physical and Occupational Therapy in Pediatrics, 2014 Vol 34(3), pp. 245-259. Available at: DOI: 10.3109/01942638.2013.866611

 2013

• McCullough N; Parkes J; Kerr C; McDowell BC. “The health of children and young people with cerebral palsy: a longitudinal, population-based study” International Journal of Nursing Studies, 2013, Vol. 50(6), pp. 747-56. Available at: https://doi.org/10.1016/j.ijnurstu.2011.01.011
• Parkinson KN; Dickinson HO; Arnaud C; Lyons A; Colver A; SPARCLE group. “Pain in young people aged 13 to 17 years with cerebral palsy: cross-sectional Multicentre European study” Archives of Disease in Childhood, 2013, Vol. 98(6), pp. 434-440. Available at: http://dx.doi.org/10.1136/archdischild-2012-303482
• Colver A; Longwell S. “New understanding of adolescent brain development: relevance to transitional healthcare for young people with long term conditions” Archives of Disease in Childhood, 2013, Vol. 98, pp. 902-907. Available at:http://dx.doi.org/10.1136/archdischild-2013-303945
• Colver A; Merrick H; Deverill M; Le Couteur A; Parr J; Pearce MS; Rapley T; Vale L; Watson R; McConachie H. “Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services”  BMC Public Health, 2013, Vol. 13(675). Available at: https://doi.org/10.1186/1471-2458-13-675

 Reports

• All Party Parliamentary Group on Cerebral Palsy. "Growing up: the transition from childhood to adulthood ", 2022. Available at https://actioncp.org/first-ever-all-party-paliamentary-group-on-cerebral-palsy/ 
• All Party Parliamentary Group on Cerebral Palsy. "Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment", 2021. Available at: https://actioncp.org/first-ever-all-party-paliamentary-group-on-cerebral-palsy/
• SCPE. "Surveillance of Cerebral Palsy in Europe (SCPE) Scientific report 1998 - 2018", 2018. 
• Perra O; Garcia Jalon EG; Cummings C; Platt MJ; Knox H. "Children and young people with cerebral palsy in Northern Ireland (1981-2008): A comprehensive report from the Northern Ireland Cerebral Palsy Register", 2016. Available by clicking here.
• Herron S; Parkes JL; Donnelly M.  "Evaluation of the CrisP service: A report to the Northern Ireland Council of Orthopaedic Development (NICOD)", 1997.
• Parkes JL; Dolk H; Hill N. "Children and Young People with Cerebral Palsy in Northern Ireland - Birth years 1977 to 1997. A comprehensive Report from the Northern Ireland Cerebral Palsy Register", 2005, Commissioned report.
• Parkes JL; Donnelly M; Hill N.  "Focusing on Cerebral Palsy: Reviewing and Communicating Needs for Services", 2001, Report commissioned by SCOPE.  Available at: https://pure.qub.ac.uk/portal/en/publications/focusing-on-cerebral-palsy-reviewing-and-communicating-needs-for-services(fbf7ea5e-0d2f-4304-893b-4d8e655b897e).html

 Related Book Chapters

• Parkes J and Clarke S.  Children with complex motor disability.  IN:Glasper E A and Richardson J.  (Eds) (2006) A Textbook of Children’s and Young People’s Nursing. Churchill Livingstone, Elsevier. Edinburgh.
• Parkes J.  Cerebral palsy.  IN:  Yarnell, J (Ed) (1^st Ed) (2006) Epidemiology and Prevention:  A Systems based approach.  Oxford University Press.