Shona Goldsmith1, Sarah McIntyre1,2, Hayley Smithers-Sheedy1, Eve Blair2, Christine Cans3, Linda Watson2,4, Marshalyn Yeargin-Allsopp5. 1. Cerebral Palsy Alliance, The University of Sydney, Sydney, NSW, Australia. 2. Telethon Kids Institute, University of Western Australia, Perth, WA, Australia. 3. RHEOP-ThEMAS - Centre Hospitalier Universitaire de Grenoble, Grenoble Université, Grenoble, France. 4. Department of Health Western Australia, Perth, WA, Australia. 5. Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA.
Abstract
AIM: 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. METHOD: 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. RESULTS: 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. INTERPRETATION: Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.
AIM: 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. METHOD: 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. RESULTS: 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. INTERPRETATION: Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.
Authors: Lindsay Pennington; Daniel Virella; Tone Mjøen; Maria da Graça Andrada; Janice Murray; Allan Colver; Kate Himmelmann; Gija Rackauskaite; Andra Greitane; Audrone Prasauskiene; Guro Andersen; Javier de la Cruz Journal: Res Dev Disabil Date: 2013-07-24
Authors: Marshalyn Yeargin-Allsopp; Kim Van Naarden Braun; Nancy S Doernberg; Ruth E Benedict; Russell S Kirby; Maureen S Durkin Journal: Pediatrics Date: 2008-03 Impact factor: 7.124
Authors: Hamdy N El-Tallawy; Wafaa Ma Farghaly; Ghaydaa A Shehata; Tarek A Rageh; Nabil A Metwally; Reda Badry; Mohamed Am Sayed; Mohamed Abd El Hamed; Ahmed Abd-Elwarth; Mahmoud R Kandil Journal: Neuropsychiatr Dis Treat Date: 2014-07-08 Impact factor: 2.570
Authors: Diane Sellers; Anne Mandy; Lindsay Pennington; Matthew Hankins; Christopher Morris Journal: Dev Med Child Neurol Date: 2013-12-18 Impact factor: 5.449
Authors: Qing Li; Stephen L Kinsman; Dorothea D Jenkins; Melbourne F Hovell; Rita M Ryan Journal: Dev Med Child Neurol Date: 2018-11-12 Impact factor: 5.449
Authors: Nana Amankwah; Maryam Oskoui; Rochelle Garner; Christina Bancej; Douglas G Manuel; Ron Wall; Philippe Finès; Julie Bernier; Karen Tu; Kim Reimer Journal: Health Promot Chronic Dis Prev Can Date: 2020-02 Impact factor: 3.240
Authors: Bhooma R Aravamuthan; Darcy Fehlings; Sheetal Shetty; Michael Fahey; Laura Gilbert; Ann Tilton; Michael C Kruer Journal: Pediatrics Date: 2021-01-05 Impact factor: 7.124
Authors: Alastair H MacLennan; Sara Lewis; Andres Moreno-De-Luca; Michael Fahey; Richard J Leventer; Sarah McIntyre; Hilla Ben-Pazi; Mark Corbett; Xiaoyang Wang; Gareth Baynam; Darcy Fehlings; Manju A Kurian; Changlian Zhu; Kate Himmelmann; Hayley Smithers-Sheedy; Yana Wilson; Carlos Santos Ocaña; Clare van Eyk; Nadia Badawi; Richard F Wintle; Bo Jacobsson; David J Amor; Carina Mallard; Luis A Pérez-Jurado; Mikko Hallman; Peter J Rosenbaum; Michael C Kruer; Jozef Gecz Journal: J Child Neurol Date: 2019-04-09 Impact factor: 1.987
Authors: Paul Gross; Mary Gannotti; Amy Bailes; Susan D Horn; Jacob Kean; Unni G Narayanan; Jerry Oakes; Garey Noritz Journal: Arch Rehabil Res Clin Transl Date: 2020-04-19