{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T22:34:28Z","timestamp":1785537268872,"version":"3.56.0"},"reference-count":26,"publisher":"Elsevier BV","issue":"3","license":[{"start":{"date-parts":[[2020,9,1]],"date-time":"2020-09-01T00:00:00Z","timestamp":1598918400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2020,9,1]],"date-time":"2020-09-01T00:00:00Z","timestamp":1598918400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2020,4,9]],"date-time":"2020-04-09T00:00:00Z","timestamp":1586390400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"name":"Schwab Charitable Donor Advised Fund"}],"content-domain":{"domain":["archives-rrct.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Archives of Rehabilitation Research and Clinical Translation"],"published-print":{"date-parts":[[2020,9]]},"DOI":"10.1016\/j.arrct.2020.100054","type":"journal-article","created":{"date-parts":[[2020,4,19]],"date-time":"2020-04-19T18:34:41Z","timestamp":1587321281000},"page":"100054","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":8,"title":["Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report"],"prefix":"10.1016","volume":"2","author":[{"given":"Paul","family":"Gross","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7217-3304","authenticated-orcid":false,"given":"Mary","family":"Gannotti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Bailes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan D.","family":"Horn","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacob","family":"Kean","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Unni G.","family":"Narayanan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jerry","family":"Oakes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Garey","family":"Noritz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.arrct.2020.100054_bib1","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1111\/dmcn.13026","article-title":"A special supplement: findings from the Australian Cerebral Palsy Register, birth years 1993 to 2006","volume":"58","author":"Smithers-Sheedy","year":"2016","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib2","doi-asserted-by":"crossref","first-page":"1293","DOI":"10.1212\/WNL.0000000000003116","article-title":"Report of a workshop on research gaps in the treatment of cerebral palsy","volume":"87","author":"Lungu","year":"2016","journal-title":"Neurology"},{"key":"10.1016\/j.arrct.2020.100054_bib3","doi-asserted-by":"crossref","first-page":"907","DOI":"10.2522\/ptj.20130024","article-title":"Research summit III proceedings on dosing in children with an injured brain or cerebral palsy: executive summary","volume":"94","author":"Kolobe","year":"2014","journal-title":"Phys Ther"},{"issue":"8 Suppl","key":"10.1016\/j.arrct.2020.100054_bib4","doi-asserted-by":"crossref","first-page":"S127","DOI":"10.1016\/j.apmr.2011.10.031","article-title":"Practice-based evidence research in rehabilitation: an alternative to randomized controlled trials and traditional observational studies","volume":"93","author":"Horn","year":"2012","journal-title":"Arch Phys Med Rehabil"},{"issue":"8 Suppl","key":"10.1016\/j.arrct.2020.100054_bib5","doi-asserted-by":"crossref","first-page":"S304","DOI":"10.1016\/j.apmr.2014.11.030","article-title":"Traumatic brain injury patient, injury, therapy, and ancillary treatments associated with outcomes at discharge and 9 months postdischarge","volume":"96","author":"Horn","year":"2015","journal-title":"Arch Phys Med Rehabil"},{"issue":"Suppl. 2","key":"10.1016\/j.arrct.2020.100054_bib6","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1111\/dmcn.12999","article-title":"An international survey of cerebral palsy registers and surveillance systems","volume":"58","author":"Goldsmith","year":"2016","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib7","doi-asserted-by":"crossref","first-page":"854","DOI":"10.1136\/jech.2004.028662","article-title":"Participatory action research","volume":"60","author":"Baum","year":"2006","journal-title":"J Epidemiol Community Health"},{"key":"10.1016\/j.arrct.2020.100054_bib9","doi-asserted-by":"crossref","first-page":"156","DOI":"10.3171\/2009.3.PEDS08215","article-title":"Infection rates following initial cerebrospinal fluid shunt placement across pediatric hospitals in the United States. Clinical article","volume":"4","author":"Simon","year":"2009","journal-title":"J Neurosurg Pediatr"},{"key":"10.1016\/j.arrct.2020.100054_bib10","first-page":"104","article-title":"The future of rheumatology research: the Childhood Arthritis and Rheumatology Research Alliance","volume":"36","author":"Sandborg","year":"2006","journal-title":"Curr Probl Pediatr Adolesc Health Care"},{"key":"10.1016\/j.arrct.2020.100054_bib11","doi-asserted-by":"crossref","first-page":"450","DOI":"10.1002\/ibd.21394","article-title":"ImproveCareNow: the development of a pediatric inflammatory bowel disease improvement network","volume":"17","author":"Crandall","year":"2011","journal-title":"Inflamm Bowel Dis"},{"key":"10.1016\/j.arrct.2020.100054_bib12","doi-asserted-by":"crossref","first-page":"4383","DOI":"10.1210\/jc.2012-1561","article-title":"The T1D Exchange clinic registry","volume":"97","author":"Beck","year":"2012","journal-title":"J Clin Endocrinol Metab"},{"key":"10.1016\/j.arrct.2020.100054_bib13","doi-asserted-by":"crossref","first-page":"936","DOI":"10.1111\/dmcn.12789","article-title":"Cerebral palsy research funding from the National Institutes of Health, 2001 to 2013","volume":"57","author":"Wu","year":"2015","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib14","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1111\/dmcn.13227","article-title":"\u2018Learn From Every Patient\u2019: implementation and early results of a learning health system","volume":"59","author":"Lowes","year":"2017","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib15","first-page":"266","article-title":"Systematic review of cerebral palsy registries\/surveillance groups: relationships between registry characteristics and knowledge dissemination","volume":"3","author":"Hurley","year":"2015","journal-title":"Int J Phys Med Rehabil"},{"key":"10.1016\/j.arrct.2020.100054_bib16","doi-asserted-by":"crossref","first-page":"1534","DOI":"10.1177\/0883073811408903","article-title":"The Cerebral Palsy Research Registry: development and progress toward national collaboration in the United States","volume":"26","author":"Hurley","year":"2011","journal-title":"J Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib17","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1097\/PEP.0000000000000377","article-title":"Pediatric rehabilitation services for children with cerebral palsy: what can existing data sources tell us?","volume":"29","author":"Gannotti","year":"2017","journal-title":"Pediatr Phys Ther"},{"key":"10.1016\/j.arrct.2020.100054_bib19","series-title":"The SAGE handbook of qualitative research","first-page":"387","article-title":"Jazz and the banyan tree: roots and riffs on participatory action research","author":"Brydon-Miller","year":"2011"},{"key":"10.1016\/j.arrct.2020.100054_bib20","doi-asserted-by":"crossref","first-page":"411","DOI":"10.2522\/ptj.20130022","article-title":"A path model for evaluating dosing parameters for children with cerebral palsy","volume":"94","author":"Gannotti","year":"2014","journal-title":"Phys Ther"},{"key":"10.1016\/j.arrct.2020.100054_bib21","doi-asserted-by":"crossref","first-page":"756","DOI":"10.3171\/2015.11.PEDS15421","article-title":"Risk factors for baclofen pump infection in children: a multivariate analysis","volume":"17","author":"Spader","year":"2016","journal-title":"J Neurosurg Pediatr"},{"key":"10.1016\/j.arrct.2020.100054_bib22","doi-asserted-by":"crossref","first-page":"720","DOI":"10.1302\/0301-620X.84B5.0840720","article-title":"Hip surveillance in children with cerebral palsy. Impact on the surgical management of spastic hip disease","volume":"84","author":"Dobson","year":"2002","journal-title":"J Bone Joint Surg Br"},{"key":"10.1016\/j.arrct.2020.100054_bib23","first-page":"235","article-title":"Hip surveillance for children with cerebral palsy: are the Australian standards the gold standard?","volume":"4","author":"Narayanan","year":"2011","journal-title":"J Pediatr Rehabil Med"},{"issue":"Suppl. 2","key":"10.1016\/j.arrct.2020.100054_bib24","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1111\/dmcn.13001","article-title":"Temporal trends in cerebral palsy by impairment severity and birth gestation","volume":"58","author":"Reid","year":"2016","journal-title":"Dev Med Child Neurol"},{"issue":"Suppl. 2","key":"10.1016\/j.arrct.2020.100054_bib25","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1111\/dmcn.13026","article-title":"A special supplement: findings from the Australian Cerebral Palsy Register, birth years 1993 to 2006","volume":"58","author":"Smithers-Sheedy","year":"2016","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib26","doi-asserted-by":"crossref","first-page":"832","DOI":"10.1016\/j.ridd.2011.12.001","article-title":"Medical expenditures attributable to cerebral palsy and intellectual disability among Medicaid-enrolled children","volume":"33","author":"Kancherla","year":"2012","journal-title":"Res Dev Disabil"},{"key":"10.1016\/j.arrct.2020.100054_bib27","doi-asserted-by":"crossref","first-page":"976","DOI":"10.1111\/dmcn.13723","article-title":"A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 1.0 recommendations","volume":"60","author":"Schiariti","year":"2018","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.arrct.2020.100054_bib28","doi-asserted-by":"crossref","first-page":"234","DOI":"10.1097\/PEP.0000000000000614","article-title":"Documenting physical therapy dose for individuals with cerebral palsy: a quality improvement initiative","volume":"31","author":"Bailes","year":"2019","journal-title":"Pediatr Phys Ther"}],"container-title":["Archives of Rehabilitation Research and Clinical Translation"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2590109520300197?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2590109520300197?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T01:43:03Z","timestamp":1762911783000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S2590109520300197"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,9]]},"references-count":26,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2020,9]]}},"alternative-id":["S2590109520300197"],"URL":"https:\/\/doi.org\/10.1016\/j.arrct.2020.100054","relation":{},"ISSN":["2590-1095"],"issn-type":[{"value":"2590-1095","type":"print"}],"subject":[],"published":{"date-parts":[[2020,9]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report","name":"articletitle","label":"Article Title"},{"value":"Archives of Rehabilitation Research and Clinical Translation","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.arrct.2020.100054","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2020 The Authors. Published by Elsevier Inc. on behalf of the American Congress of Rehabilitation Medicine.","name":"copyright","label":"Copyright"}],"article-number":"100054"}}