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Neuropediatrics 2020; 51(02): 105-112
DOI: 10.1055/s-0039-3402003
Original Article
Georg Thieme Verlag KG Stuttgart · New York

European and Australian Cerebral Palsy Surveillance Networks Working Together for Collaborative Research

Elodie Sellier
1   Université Grenoble Alpes, CNRS, Grenoble INP, CHU Grenoble, France
2   Registre du Handicap de l'Enfant et Observatoire Périnatal, Grenoble, France
,
Sarah McIntyre
3   Cerebral Palsy Alliance, The University of Sydney, Sydney, New South Wales, Australia
4   Discipline of Child and Adolescent Health, Sydney Medical School, the University of Sydney, New South Wales, Australia
,
Hayley Smithers-Sheedy
3   Cerebral Palsy Alliance, The University of Sydney, Sydney, New South Wales, Australia
4   Discipline of Child and Adolescent Health, Sydney Medical School, the University of Sydney, New South Wales, Australia
,
Mary Jane Platt
5   Norwich Medical School, University of East Anglia, Norwich, Norfolk, United Kingdom
,
on behalf of SCPE and ACPR Groups › Author Affiliations Funding The ACPR is funded by the Cerebral Palsy Alliance Research Foundation. The Victoria CP Register receives funding from the Victorian Department of Health and Human Services and the Royal Children's Hospital Foundation Western Australian Register of Developmental Anomalies—Cerebral Palsy is funded as a statutory data collection of the Department of Health WA. South Australian Cerebral Palsy Register is part of the Birth Defects Register under the auspices of the Women's and Children's Health Network South Australia.
S.M. received salary support through an Early Career Fellowship 1111270 from the National Health and Medical Research Council of Australia. H.S.S. received support through a National Health and Medical Research Council Early Career Fellowship 1144566 and the Australasian Cerebral Palsy Clinical Trials Network. SCPE collaboration was supported by grants from the European Commission (SCPE-NET 2008 13 07/FIB_H120_FY2014 OG)
Further Information

Publication History

26 February 2019

31 October 2019

Publication Date:
07 January 2020 (online)

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Abstract

Aims This study aims to describe and compare goals and methods, characteristics of children with cerebral palsy (CP), and to compare prevalence of CP in the Surveillance of Cerebral Palsy in Europe (SCPE) and the Australian Cerebral Palsy Register (ACPR).

Methods This study compares the objectives of the two networks and their working practices; key documents from both above-mentioned networks were used. Children included in the comparison of the descriptive profile and prevalence measures were born between 1993 and 2009 for Australian data and between 1980 and 2003 for SCPE.

Results SCPE contributed 10,756 cases and ACPR 6,803. There were similar distributions of motor type, severity, and gestational age groups, except for the proportion of the lowest gestational age category (range, 20–27 weeks) which was twice higher in the ACPR (13 vs. 7%). Associated impairment proportions were also similar except for severe vision impairment which was more than twice as high in SCPE as in the ACPR (11 vs. 4%), but most likely due to a subtle difference in definitions. Prevalence rates were comparable at the same time point in the different groups of birth weight, and declined over time, except for the moderately low birth weight in ACPR.

Conclusion Two CP networks representing two continents have compared their major characteristics to facilitate the comparison across their study populations. These characteristics proved to be similar with only marginal differences. This gives additional strength to the observation in both networks that CP prevalence is decreasing which is of great importance for families and health care systems.

Keywords

cerebral palsy - epidemiology - registers - prevalence
 

  • References

  • 1 Cans C, Surman G, McManus V, Coghlan D, Hensey O, Johnson A. Cerebral palsy registries. Semin Pediatr Neurol 2004; 11 (01) 18-23
    CrossrefPubMedGoogle Scholar
  • 2 Goldsmith S, McIntyre S, Smithers-Sheedy H. , et al; Australian Cerebral Palsy Register Group. An international survey of cerebral palsy registers and surveillance systems. Dev Med Child Neurol 2016; 58 (Suppl. 02) 11-17
    PubMedGoogle Scholar
  • 3 Surveillance of Cerebral Palsy in Europe. Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE). Dev Med Child Neurol 2000; 42 (12) 816-824
    PubMedGoogle Scholar
  • 4 Sellier E, Horber V, Krägeloh-Mann I, De La Cruz J, Cans C. ; SCPE Collaboration. Interrater reliability study of cerebral palsy diagnosis, neurological subtype, and gross motor function. Dev Med Child Neurol 2012; 54 (09) 815-821
    CrossrefPubMedGoogle Scholar
  • 5 ACPR. Report of the Australian Cerebral Palsy Register, Birth Years 1993–2006. 2013 Report is downloadable at https://www.cerebralpalsy.org.au/wp-content/uploads/2013/04/ACPR-Report_Web_2013.pdf
    PubMed
  • 6 ACPR. Australian Cerebral Palsy Register Report, 1993–2009. 2016 Report is downloadable at https://cpregister.com/wp-content/uploads/2018/05/ACPR-Report_Web_2016.pdf
    PubMed
  • 7 Sellier E, Platt MJ, Andersen GL, Krägeloh-Mann I, De La Cruz J, Cans C. ; Surveillance of Cerebral Palsy Network. Decreasing prevalence in cerebral palsy: a multi-site European population-based study, 1980 to 2003. Dev Med Child Neurol 2016; 58 (01) 85-92
    PubMedGoogle Scholar
  • 8 Rosenbaum P, Paneth N, Leviton A. , et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 2007; 109: 8-14
    PubMedGoogle Scholar
  • 9 Sellier E, Surman G, Himmelmann K. , et al. Trends in prevalence of cerebral palsy in children born with a birthweight of 2,500 g or over in Europe from 1980 to 1998. Eur J Epidemiol 2010; 25 (09) 635-642
    CrossrefPubMedGoogle Scholar
  • 10 Andersen GL, Romundstad P, De La Cruz J. , et al. Cerebral palsy among children born moderately preterm or at moderately low birthweight between 1980 and 1998: a European register-based study. Dev Med Child Neurol 2011; 53 (10) 913-919
    CrossrefPubMedGoogle Scholar
  • 11 Platt MJ, Cans C, Johnson A. , et al. Trends in cerebral palsy among infants of very low birthweight (<1500 g) or born prematurely (<32 weeks) in 16 European centres: a database study. Lancet 2007; 369 (9555): 43-50
    CrossrefPubMedGoogle Scholar
  • 12 Reid SM, Meehan E, McIntyre S, Goldsmith S, Badawi N, Reddihough DS. ; Australian Cerebral Palsy Register Group. Temporal trends in cerebral palsy by impairment severity and birth gestation. Dev Med Child Neurol 2016; 58 (Suppl. 02) 25-35
    PubMedGoogle Scholar
  • 13 Galea C, Mcintyre S, Smithers-Sheedy H. , et al; Australian Cerebral Palsy Register Group. Cerebral palsy trends in Australia (1995-2009): a population-based observational study. Dev Med Child Neurol 2019; 61 (02) 186-193
    CrossrefPubMedGoogle Scholar
  • 14 Ghosh RE, Berild JD, Sterrantino AF, Toledano MB, Hansell AL. Birth weight trends in England and Wales (1986-2012): babies are getting heavier. Arch Dis Child Fetal Neonatal Ed 2018; 103 (03) F264-F270
    CrossrefPubMedGoogle Scholar
  • 15 Horbar JD, Badger GJ, Carpenter JH. , et al; Members of the Vermont Oxford Network. Trends in mortality and morbidity for very low birth weight infants, 1991-1999. Pediatrics 2002; 110 (1, Pt 1): 143-151
    CrossrefPubMedGoogle Scholar
  • 16 Stoll BJ, Hansen NI, Bell EF. , et al; Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Trends in care practices, morbidity, and mortality of extremely preterm neonates, 1993-2012. JAMA 2015; 314 (10) 1039-1051
    CrossrefPubMedGoogle Scholar