An international survey of cerebral palsy registers and surveillance systems

Developmental Medicine and Child Neurology
Shona GoldsmithAustralian Cerebral Palsy Register Group

Abstract

To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration. Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted. Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration. Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collec...Continue Reading

References

Aug 19, 1996·The Medical Journal of Australia·E M Blair, R E Shean
Apr 1, 1997·Developmental Medicine and Child Neurology·R PalisanoB Galuppi
Sep 24, 1998·Developmental Medicine and Child Neurology·N BadawiF Stanley
Aug 22, 2000·Archives of Disease in Childhood·A Johnson
Dec 29, 2000·Developmental Medicine and Child Neurology·UNKNOWN Surveillance of Cerebral Palsy in Europe
May 30, 2002·Developmental Medicine and Child Neurology·Eva Beckung, Gudrun Hagberg
May 11, 2004·Seminars in Pediatric Neurology·Christine CansAnn Johnson
Jun 20, 2006·Developmental Medicine and Child Neurology·Ann-Christin EliassonPeter Rosenbaum
Mar 21, 2007·Developmental Medicine and Child Neurology. Supplement·Peter RosenbaumBo Jacobsson
Jun 21, 2011·Acta Obstetricia Et Gynecologica Scandinavica·Kate HimmelmannPoul Thorsen
Jun 29, 2011·Developmental Medicine and Child Neurology·Mary Jo Cooley HideckerKara Taylor
Jul 31, 2013·Research in Developmental Disabilities·Lindsay PenningtonJavier de la Cruz
Oct 12, 2013·Developmental Medicine and Child Neurology·Hayley Smithers-SheedyMeredith Wilson
Dec 19, 2013·Developmental Medicine and Child Neurology·Diane SellersChristopher Morris
Mar 25, 2014·Seminars in Pediatric Neurology·Kirsten A DonaldDavid Bearden
Apr 23, 2014·Developmental Medicine and Child Neurology·Myrill SolaskiMaryam Oskoui
Jul 22, 2014·Neuropsychiatric Disease and Treatment·Hamdy N El-TallawyMahmoud R Kandil
Apr 19, 2016·Developmental Medicine and Child Neurology·Elizabeth BartyLeanne M Johnston

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Citations

Jan 15, 2016·Developmental Medicine and Child Neurology·Hayley Smithers-SheedyUNKNOWN Australian Cerebral Palsy Register Group
May 10, 2017·Developmental Medicine and Child Neurology·Kim Van Naarden Braun
Apr 22, 2017·Archives of Physical Medicine and Rehabilitation·Joyce L BennerMarij E Roebroeck
Mar 10, 2018·JBI Database of Systematic Reviews and Implementation Reports·Christine TaylorNadia Badawi
Jun 28, 2018·American Journal on Intellectual and Developmental Disabilities·Suzanne McDermottBrian S Armour
Oct 9, 2018·Journal of Paediatrics and Child Health·Catherine MorganIona Novak
Nov 6, 2018·Developmental Medicine and Child Neurology·Gulam KhandakerNadia Badawi
Jul 25, 2019·Journal of Child Neurology·Emmanuel Segnon SogbossiYannick Bleyenheuft
Jan 2, 2020·BMJ Health & Care Informatics·Mina AfzaliReza Rabiei
Jun 23, 2019·Injury Prevention : Journal of the International Society for Child and Adolescent Injury Prevention·Laura MäättänenLeena Haataja
Aug 21, 2020·BMJ Open·Thilini Madushika HeiyanthuduwageNimisha Muttiah
Oct 6, 2017·Developmental Medicine and Child Neurology·Shona GoldsmithMichele Hansen
Apr 10, 2019·Journal of Child Neurology·Alastair H MacLennanJozef Gecz
Aug 15, 2018·Nature Reviews. Neurology·Steven J KorzeniewskiNigel Paneth
Jan 13, 2021·Developmental Medicine and Child Neurology·Shona GoldsmithUNKNOWN Comprehensive CA-CP Study Group
Mar 19, 2021·Annals of the Academy of Medicine, Singapore·Zhi Min NgTong Hong Yeo
Apr 15, 2021·Archives de pédiatrie : organe officiel de la Sociéte française de pédiatrie·H Arabi
Jun 8, 2021·Journal of Pediatric Rehabilitation Medicine·Deirdre FlanaganMichael E Msall
Jan 7, 2021·Pediatrics·Bhooma R AravamuthanMichael C Kruer

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