{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,18]],"date-time":"2026-10-18T20:41:09Z","timestamp":1792356069754,"version":"4.4.0"},"reference-count":39,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,10,18]],"date-time":"2026-10-18T00:00:00Z","timestamp":1792281600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,10,18]],"date-time":"2026-10-18T00:00:00Z","timestamp":1792281600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"abstract":"<jats:title>Resumo<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objetivo<\/jats:title>\n                    <jats:p>Descrever a implementa\u00e7\u00e3o da estrat\u00e9gia de envolvimento do p\u00fablico baseada nas normas do Reino Unido para o envolvimento do p\u00fablico em pesquisa no Registro Brasileiro de Paralisia Cerebral (RB\u2010PC).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>M\u00e9todos<\/jats:title>\n                    <jats:p>Realizamos um estudo participativo, explorat\u00f3rio, sequencial, de m\u00e9todos mistos. Onze parceiros (cinco adultos com paralisia cerebral e seis m\u00e3es) de diferentes estados brasileiros participaram de um processo online em 4 fases: integra\u00e7\u00e3o dos parceiros; constru\u00e7\u00e3o de conhecimento; explora\u00e7\u00e3o das normas de envolvimento do p\u00fablico e identifica\u00e7\u00e3o de barreiras e facilitadores; e desenvolvimento de um plano de a\u00e7\u00e3o e cocria\u00e7\u00e3o de um processo de implementa\u00e7\u00e3o de um grupo de envolvimento do p\u00fablico.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Resultados<\/jats:title>\n                    <jats:p>Os parceiros selecionaram o WhatsApp como principal meio de comunica\u00e7\u00e3o e ficaram satisfeitos com a din\u00e2mica e o conte\u00fado dos encontros, exceto quanto \u00e0 dura\u00e7\u00e3o das reuni\u00f5es (1 hora e 30 minutos). As barreiras relatadas inclu\u00edram inacessibilidade da linguagem, atitudes dos pesquisadores, empoderamento familiar limitado, restri\u00e7\u00f5es de tempo e falta de flexibilidade por parte dos pesquisadores. Os facilitadores inclu\u00edram flexibilidade por parte dos pesquisadores, formatos variados de compartilhamento de conhecimento, uso de linguagem simples, medidas de impacto qualitativas, cria\u00e7\u00e3o de um conselho de governan\u00e7a e revis\u00e3o das etapas de implementa\u00e7\u00e3o do envolvimento p\u00fablico. Os parceiros propuseram uma s\u00e9tima norma: revis\u00e3o cont\u00ednua (das normas, da corresponsabilidade e dos aspectos da pesquisa). Foi cocriado um plano de implementa\u00e7\u00e3o com 26 a\u00e7\u00f5es e um modelo de implementa\u00e7\u00e3o do envolvimento do p\u00fablico com 6 fases para registros de paralisia cerebral.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interpreta\u00e7\u00e3o<\/jats:title>\n                    <jats:p>As normas do Reino Unido para o envolvimento do p\u00fablico em pesquisas se mostraram um guia adequado para o grupo de envolvimento do p\u00fablico do RB\u2010PC. As barreiras e os facilitadores identificados orientaram as a\u00e7\u00f5es do grupo, resultando em um processo de implementa\u00e7\u00e3o do envolvimento p\u00fablico fundamentado nas necessidades e perspectivas dos parceiros.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/dmcn.70584","type":"journal-article","created":{"date-parts":[[2026,10,18]],"date-time":"2026-10-18T20:31:06Z","timestamp":1792355466000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Envolvimento p\u00fablico no Registro Brasileiro de Paralisia Cerebral: um estudo explorat\u00f3rio, sequencial, de m\u00e9todos mistos"],"prefix":"10.1111","author":[{"given":"Luana Cristina","family":"da Silva","sequence":"first","affiliation":[{"name":"Programa de P\u00f3s\u2010gradua\u00e7\u00e3o em Ci\u00eancias da Reabilita\u00e7\u00e3o, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Kerr","sequence":"additional","affiliation":[{"name":"Escola de Enfermagem e Obstetr\u00edcia Queen's University Belfast  Belfast Reino Unido"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Israt","family":"Jahan","sequence":"additional","affiliation":[{"name":"Escola de Ci\u00eancias da Sa\u00fade, M\u00e9dicas e Aplicadas Central Queensland University  Rockhampton Queensland Austr\u00e1lia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raphael Fagundes Figueira","family":"Pinho","sequence":"additional","affiliation":[{"name":"Grupo de Envolvimento do P\u00fablico do Registro Brasileiro de Paralisia Cerebral, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aline Lincoln","family":"Silveira","sequence":"additional","affiliation":[{"name":"Grupo de Envolvimento do P\u00fablico do Registro Brasileiro de Paralisia Cerebral, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"N\u00e1dia","family":"Badawi","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Alliance Research Institute, Especialidade de Sa\u00fade da Crian\u00e7a e do Adolescente, Escola M\u00e9dica de Sydney, Faculdade de Medicina e Sa\u00fade The University of Sydney  Sydney New South Wales Austr\u00e1lia"},{"name":"Grace Centre for Newborn Intensive Care Sydney Children's Hospital Network  Sydney New South Wales Austr\u00e1lia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gulam","family":"Khandaker","sequence":"additional","affiliation":[{"name":"Escola de Ci\u00eancias da Sa\u00fade, M\u00e9dicas e Aplicadas Central Queensland University  Rockhampton Queensland Austr\u00e1lia"},{"name":"Central Queensland Hospital and Health Service  Rockhampton Queensland Austr\u00e1lia"},{"name":"National Centre for Immunisation Research and Surveillance (NCIRS)  Sydney New South Wales Austr\u00e1lia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gabriela Loren\u00e7oni","family":"Pauletti","sequence":"additional","affiliation":[{"name":"Departamento de Fisioterapia, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Egmar","family":"Longo","sequence":"additional","affiliation":[{"name":"Programa de P\u00f3s\u2010gradua\u00e7\u00e3o em Fisioterapia Universidade Federal da Para\u00edba  Jo\u00e3o Pessoa Brasil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mercedes Ruiz","family":"Brunner","sequence":"additional","affiliation":[{"name":"Instituto Universitario de Ciencias Biom\u00e9dicas de C\u00f3rdoba (IUCBC) Centro de Investigaci\u00f3n en Medicina Traslacional \u201cSevero R. Amuch\u00e1stegui\u201d (CIMETSA) U.A. Consejo Nacional de Investigaciones Cient\u00edficas y T\u00e9cnicas (CONICET)  C\u00f3rdoba Argentina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula Silva","family":"de Carvalho Chagas","sequence":"additional","affiliation":[{"name":"Programa de P\u00f3s\u2010 Gradua\u00e7\u00e3o em Ci\u00eancias da Reabilita\u00e7\u00e3o e Desempenho F\u00edsico\u2010Funcional, Faculdade de Fisioterapia Universidade Federal de Juiz de Fora  Juiz de Fora Brasil"},{"name":"CanChild McMaster University  Hamilton Ontario Canad\u00e1"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H\u00e9rcules Ribeiro","family":"Leite","sequence":"additional","affiliation":[{"name":"Programa de P\u00f3s\u2010gradua\u00e7\u00e3o em Ci\u00eancias da Reabilita\u00e7\u00e3o, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brasil"},{"name":"CanChild McMaster University  Hamilton Ontario Canad\u00e1"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,18]]},"reference":[{"issue":"1","key":"e_1_2_8_2_1","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1111\/dmcn.15438","article-title":"Individuals with lived experience of disability should participate in every stage of research","volume":"65","author":"Dan B.","year":"2023","journal-title":"Dev Med Child Neurol."},{"issue":"1","key":"e_1_2_8_3_1","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1038\/s41390-025-03824-5","article-title":"Authentic collaboration in research: partnering with people with lived experience","volume":"98","author":"Garrity N","year":"2025","journal-title":"Pediatr Res."},{"issue":"4","key":"e_1_2_8_4_1","doi-asserted-by":"crossref","first-page":"465","DOI":"10.1111\/dmcn.70149","article-title":"Updated description of cerebral palsy","volume":"68","author":"Dan B","year":"2026","journal-title":"Dev Med Child Neurol."},{"issue":"11","key":"e_1_2_8_5_1","doi-asserted-by":"crossref","first-page":"1327","DOI":"10.1111\/dmcn.14926","article-title":"Epidemiology of cerebral palsy in low\u2010 and middle\u2010income countries: preliminary findings from an international multi\u2010centre cerebral palsy register","volume":"63","author":"Jahan I","year":"2021","journal-title":"Dev Med Child Neurol."},{"issue":"12","key":"e_1_2_8_6_1","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2022-071315","article-title":"Latin American Cerebral Palsy Register (LATAM\u2010CPR): study protocol to develop a collaborative register with surveillance of children with cerebral palsy in Latin American countries","volume":"13","author":"M Ruiz Brunner M de las","year":"2023","journal-title":"BMJ Open."},{"issue":"6","key":"e_1_2_8_7_1","doi-asserted-by":"crossref","first-page":"765","DOI":"10.1111\/dmcn.15798","article-title":"Cerebral palsy registers around the world: A survey","volume":"66","author":"Goldsmith S","year":"2024","journal-title":"Dev Med Child Neurol."},{"key":"e_1_2_8_8_1","volume-title":"Australian Cerebral Palsy Register 2025 Bulletin: Birth prevalence and trends in cerebral palsy, birth years 1995\u20132018","author":"Cerebral Palsy Alliance","year":"2025"},{"issue":"12","key":"e_1_2_8_9_1","doi-asserted-by":"crossref","first-page":"1494","DOI":"10.1111\/dmcn.15346","article-title":"Global prevalence of cerebral palsy: A systematic analysis","volume":"64","author":"McIntyre S","year":"2022","journal-title":"Dev Med Child Neurol."},{"issue":"10","key":"e_1_2_8_10_1","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2023-076619","article-title":"Combined surveillance and treatment register for children with cerebral palsy: the protocol of the Netherlands CP register","volume":"13","author":"Andringa A","year":"2023","journal-title":"BMJ Open."},{"issue":"5","key":"e_1_2_8_11_1","doi-asserted-by":"crossref","first-page":"404","DOI":"10.1111\/ppe.12950","article-title":"Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network","volume":"37","author":"Arnaud C","year":"2023","journal-title":"Paediatr Perinat Epidemiol."},{"key":"e_1_2_8_12_1","unstructured":"GLMCPR website[Internet].2026[cited 2026 Mar 24]. 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