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Publications

Publications

The following publications include research from the NICPR and other studies where the Register was a collaborator.

2021

2020

 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 

 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 

 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

 2012

  • Colver A;  Thyen U;  Arnaud C;  Beckung E;  Fauconnier J;  Marcelli M;  McManus V;  Michelsen SI; Parkes J;  Parkinson K;  Dickinson HO. “Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study” Archives of Physical Medicine and Rehabilitation, 2012, Vol. 93(12), pp. 2154-2164. Available at: https://doi.org/10.1016/j.apmr.2012.07.011
  • Dickinson H; Rapp M; Arnaud C; Carlsson M; Colver AF; Fauconnier J; Lyons A; Marcelli M; Michelsen SI; Parkes, JL; Parkinson K, "Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of children with cerebral palsy" BMC research notes, 2012, in press. Available at: https://dx.doi.org/10.1016%2Fj.ridd.2014.10.043
  • McConnell K; Johnston L; Kerr C. “Therapy management of the upper limb in children with cerebral palsy: a cross-sectional survey” Developmental Neurorehabilitation, 2012, Vol 15(5), pp.343-350. Available at: https://doi.org/10.3109/17518423.2012.692124
  • McDowell BC; Salazar-Torres JJ; Kerr C; Cosgrove AP. “Passive range of motion in a population-based sample of children with spastic cerebral palsy who walk”Physical & Occupational Therapy in Pediatrics, 2012, Vol. 32(2), pp. 139-150. Available at:https://doi.org/10.3109/01942638.2011.644032
  • Parkes JL; Donnelly C (PhD Student); McDowell B; Duffy C. "Recruitment bias and clinical characteristics of participants with severe cerebral palsy in a cross-sectional survey" Journal of Advanced Nursing, 2012 Feb;68(2):368-78. Available at: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2011.05748.x/full

 2011

  • Colver AF; Dickinson H; Parkinson K; Arnaud C; Beckung E; Fauconnier J; Marcelli M; McManus V; Michelsen SI; Parkes, JL; Thyen U.  "Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European.  Disability and Rehabilitation, 2011,Vol. 33, pp. 28-35.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/20446803
  • Dickinson HO, Colver A; Sparcle Group. “Quantifying the physical, social and attitudinal environment of children with cerebral palsy” Disability & Rehabilitation, 2011, Vol. 33(1), pp. 36-50. Available at: https://doi.org/10.3109/09638288.2010.485668
  • Kerr C; McDowell B; Parkes JL; Stevenson M; Cosgrove A.  "Age-related changes in energy efficiency of gait, activity, and participation in children with cerebral palsy" Developmental Medicine and Child Neurology, 2011,Vol. 53, pp. 61-67. Available at: https://www.ncbi.nlm.nih.gov/pubmed/20875041
  • McConnell K; Johnston L; Kerr C. “Upper limb function and deformity in cerebral palsy: a review of classification systems” 2011, Vol. 52(9), pp.799-805. Available at: DOI: 10.1111/j.1469-8749.2011.03953.x
  • McCullough N; Parkes JL; Kerr C; McDowell BC. "The health of children and young people with cerebral palsy: A longitudinal, population-based study." International Journal of Nursing Studies, 2011 Feb 15. [Epub ahead of print]. Available at: https://www.ncbi.nlm.nih.gov/pubmed/21329925
  • Parkes JL; Carvale B; Marcelli M; Franco F; Colver AF. "Parenting stress and children with cerebral palsy: a European cross-sectional survey" Developmental Medicine and Child Neurology, 2011 Sep;53(9):815-21.   Available at: https://www.ncbi.nlm.nih.gov/pubmed/21707599

 2010

 2009

  • Fauconnier J; Dickinson H; Beckung E; Marcelli M; McManus V; Michelsen SI; Parkes, JL; Parkinson K; Thyen U; Arnaud C; Colver A.  "Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey" British Medical Journal, 2009. Available at: https://www.bmj.com/content/338/bmj.b1458
  • Michelsen SI; Flachs EM; Uldall P; Erikson EL; McManus V; Parkes, JL; Parkinson K; Thyen U; Arnaud C; Beckung E; Dickinson HO; Fauconnier J; Marcelli M; Colver AF.  "Frequency of participation of 8-12 year old children with cerebral palsy: a multi-centre cross sectional European study" European Journal of Paediatric Neurology, 2009, Vol. 13.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/18571944
  • McCullough N; Parkes JL; White-Koning M; Beckung E; Colver A. "Reliability and Validity of the Child Health QuestionnairePF-50 for European Children with Cerebral Palsy" Journal of Pediatric Psychology, 2009, Vol. 34, pp. 41-50.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/18499739
  • McDowell BC; Humphreys L; Kerr C; Stevenson M. “Test-retest reliability of a 1-min walk test in children with bilateral spastic cerebral palsy (BSCP)” Gait Posture, 2009, Vol. 29(2), pp. 267-269. Available at: https://www.ncbi.nlm.nih.gov/pubmed/19013798
  • Parkes JL; McCullough N; Madden SP; McCahey E.  "The health of children with cerebral palsy and stress in their parents: a population-based survey" Journal of Advanced Nursing, 2009,Vol. 65, pp. 2311-2323. Available at: https://www.ncbi.nlm.nih.gov/pubmed/19737327
  • Parkes JL; White-Koning M; McCullough N; Colver AF.  "Psychological problems in children with hemiplegia" Archives of Disease in Childhood, 2009,Vol. 94, pp. 429-433.  Available at: http://adc.bmj.com/content/94/6/429
  • Surman G; Hemming K; Platt MJ; Parkes JL; Green A; Hutton J; Kurinczuk J. "Children with cerebral palsy in the United Kingdom: Trends in severity" Paediatric and Perinatal Epidemiology, 2009,Vol. 23, pp. 513-521.   Available at:  https://www.ncbi.nlm.nih.gov/pubmed/19840287

 2008

  • Arnaud C; White-Koning M; Michelsen SI; Parkes, JL; Parkinson K; Thyen U; Beckung E; Dickinson HO; Faunconnier J; Marcelli M; McManus V; Colver AF.  "Parent reported quality of life of children with cerebral palsy in Europe" Pediatrics, 2008, Vol. 121, pp. 54-64. Available at: https://doi.org/10.1542/peds.2007-0854
  • Beckung E; White-Koning M; Marcelli M; McManus V; Michelsen SI; Parkes, JL; Parkinson K; Thyen U; Arnaud C; Fauconnier J; Colver AF.  "Health status of children with cerebral palsy living in Europe: a multi-centre study" Child: Care, Health and Development, 2008, Vol. 34, pp. 806-814 Available at: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2214.2008.00877.x/abstract
  • Donnelly C; Parkes, JL; McDowell B; Duffy C.  "Lifestyle limitations of children and young people with severe cerebral palsy: a population study protocol" Journal of Advanced, 2008,Vol. 61, pp. 557-569. Available at: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2007.04470.x/full
  • Kerr C; Parkes JL; Stevenson M; Cosgrove AP; McDowell BC. "Energy efficiency in gait, activity, participation, and health status in children with cerebral palsy." Developmental Medicine and Child Neurology, 2008, Vol. 50(3), pp. 204-210. Available at: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.02030.x/full
  • McCullough N; Parkes JL.  "Use of the Child Health Questionnaire in children with cerebral palsy: a systematic review and evaluation of the psychometric properties" Journal of Pediatric Psychology, 2008, Vol. 33, pp. 80-90.  Available at: https://doi.org/10.1093/jpepsy/jsm070
  • McDowell BC; Kerr C; Kelly C; Salazar J; Cosgrove A. “The validity of an existing gait classification system when applied to a representative population of children with hemiplegia” Gait Posture, 2008, Vol. 28(3), pp. 442-447. Available at: https://doi.org/10.1016/j.gaitpost.2008.02.003
  • Parkes JL; McCusker, C.  "Common psychology problems in children with cerebral palsy" Paediatrics and Child Health, 2008, Vol. 18, pp. 427-431.   Available at: http://dx.doi.org/10.1016/j.paed.2008.05.012
  • Parkes JL; White-Koning M; Dickinson HO; Thyen U; Arnaud C; Beckung E; Fauconnier J; Marcelli M; McManus V; Michelsen SI; Parkinson K; Colver A. "Psychological problems in children with cerebral palsy" Journal of Child Psychology and Psychiatry, 2008,Vol. 49, pp. 405-413.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/18081767

 2007

  • Dickinson H. O.; Parkinson K. N.; Ravens-Sieberer U.; Schirripa G.; Thyen U.; Arnaud C.; Beckung E.; Fauconnier J.; McManus V.; Michelsen S. I.; Parkes, JL; Colver A. "Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study" The Lancet, 2007, Vol. 369 (9580), pp. 2171-2178.  Available at: https://doi.org/10.1016/S0140-6736(07)61013-7
  • Kerr C; McDowell BC; Cosgrove A. “Oxygen cost versus a 1-minute walk test in a population of children with bilateral spastic cerebral palsy” Journal of Pediatric Orthopaedics, 2007, Vol. 27(3), pp. 283-287. Available at: https://insights.ovid.com/pubmed?pmid=17414010
  • McDowell BC; Kerr C; Parkes JL. "Interobserver agreement of the Gross Motor Function Classification System in an ambulant population of children with cerebral palsy" Developmental Medicine and Child Neurology, 2007,Vol. 49 (7), pp. 528-533.  https://www.ncbi.nlm.nih.gov/pubmed/17593126
  • White-Koning M.; Arnaud C.; Dickinson H.; Thyen U.; Beckung E.; Fauconnier J.; McManus V.; Michelsen S.; Parkes, JL; Parkinson K.; Schirripa G. (deceased); Colver A. F. "Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy" Pediatrics, 2007, Vol. 120 (4), pp. e804-e814.   Available at: https://www.ncbi.nlm.nih.gov/pubmed/17908738

 2006

  • Colver A; the SPARCLE group. “Study protocol: SPARCLE – a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy” BMC Public Health, 2006, Vol. 6, pp. 105. Available at: https://doi.org/10.1186/1471-2458-6-105
  • Dolk H; Parkes JL; Hill N.  "Trends in the prevalence of cerebral palsy in Northern Ireland, 1981-1997" Developmental Medicine and Child Neurology, 2006, Vol. 48 (6), pp. 406-412.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/16700928
  • Dickinson H; Parkinson K; McManus V; Arnaud C; Beckung E; Fauconnier J; Michelsen SI; Parkes, JL; Schirripa G; Thyen U; Colver A.  "Assessment of data quality in a European multi-centre cross-sectional study of quality of life of children with cerebral palsy" BMC Public Health, 2006, Vol. 6, pp. 273.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/17087828
  • McClelland JF; Parkes JL; Hill N; Jackson J; Saunders KJ.  "Accommodative dysfunction in children with cerebral palsy: a population based study" Investigative Ophthalmology and Visual Science, 2006, Vol. 47(5), pp. 1824-1830.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/16638987
  • Parkes JL; Kerr C; McDowell BC; Cosgrove AP "Recruitment Bias in a Population-Based Study of Children with Cerebral Palsy" Pediatrics, 2006,Vol. 118 (4), pp. 1616-1622.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/17015554
  • Surman G; Bonellie S; Chalmers J; Colver A; Dolk H; Hemming K; King A; Kurinczuk J; Parkes, JL; Platt MJ.  "UKCP: A Collaborative network of cerebral palsy registers in the United Kingdom" Public Health, 2006, Vol. 28, pp. 148-156.  Available at:  https://www.ndph.ox.ac.uk/publications/199527

 2005

  • McDowell BC; Kerr C; Parkes JL; Cosgrove AP.  "Validity of a 1 minute walk test for children with cerebral palsy." Developmental Medicine and Child Neurology, 2005, Vol. 47(11), pp. 744-748.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/16225737

 2004

  • Parkes JL; Hill N; Dolk H; Donnelly M.  "What influences physiotherapy use in children with cerebral palsy?" Child: Care, Health and Development, 2004,Vol. 30, pp. 151-160.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/14961867
  • Ross A; Parkes J. “Making doors open: caring for families of children with severe cerebral palsy” Paediatric Nursing, 2004, Vol. 16(5), pp. 14-18.   

 2002

  • Parkes JL; Donnelly M; Dolk H; Hill N.  "Use of physiotherapy services and alternatives by children with cerebral palsy" Child: Care, Health and Development, 2002, Vol. 28, pp. 469-477.  Available at: https://www.ncbi.nlm.nih.gov/pubmed/12568476

 Reports

  • 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://connectpa.co.uk/wp-content/uploads/2021/03/APPG-on-Cerebral-Palsy-report-2021.pdf 
  • SCPE. "Surveillance of Cerebral Palsy in Europe (SCPE) Scientific report 1998 - 2018", 2018. Available at: http://www.scpenetwork.eu/assets/Website-Documents/SCPE-Scientific-report-1998-2018.pdf 
  • 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
  • Parkes JL; Dolk H; Hill N.  "The Northern Ireland Cerebral Palsy Register: Birth years 1977-1992. A Progress Report."  1997.  Report to the Department of Health & Social Services Northern Ireland.
  • Parkes JL; Dolk H; Hill N.  "Use of physiotherapy services by children with cerebral palsy. Preliminary report to the Department of Health and Social Services", 1996.  Report to commissioners of research (Department of Health & Social Services Northern Ireland).  Available at: https://www.scopus.com/record/display.uri?eid=2-s2.0-0036849682&origin=resultslist
  • Parkes JL; Dolk H; Hill N.  "The Northern Ireland Cerebral Palsy Register: Birth years 1977-1989. A Progress Report" 1995.  Report to funders.
  • Parkes JL; Dolk H; Hill N.  "Number and needs of children with cerebral palsy. Report to Hemi-Help Northern Ireland" 1994.  Report to UK charity.

 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) (1st Ed) (2006) Epidemiology and Prevention:  A Systems based approach.  Oxford University Press.

 

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