{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T18:53:11Z","timestamp":1791139991275,"version":"4.1.0"},"reference-count":39,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T00:00:00Z","timestamp":1791072000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T00:00:00Z","timestamp":1791072000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100003593","name":"Conselho Nacional de Desenvolvimento Cient\u00edfico e Tecnol\u00f3gico","doi-asserted-by":"publisher","award":["402601\/2024\u20106"],"award-info":[{"award-number":["402601\/2024\u20106"]}],"id":[{"id":"10.13039\/501100003593","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100012256","name":"Cerebral Palsy Alliance Research Foundation","doi-asserted-by":"publisher","award":["PRG00125"],"award-info":[{"award-number":["PRG00125"]}],"id":[{"id":"10.13039\/100012256","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>\n                      To describe the implementation of a public involvement strategy based on the UK Standards for Public Involvement in Research within the Brazilian Cerebral Palsy Register (BrCPR)\n                      <jats:italic>.<\/jats:italic>\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>We conducted a participatory, exploratory, sequential, mixed\u2010methods study. Eleven partners (five adults with cerebral palsy and six mothers) from different Brazilian states participated in a four\u2010phase online process: partner integration; knowledge building; exploring public involvement standards and identifying barriers and facilitators; and action plan development and co\u2010creation of an implementation process of a public involvement group.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Partners selected WhatsApp as their primary communication method and were satisfied with meeting the dynamics and content, except meeting duration (1\u2009hour 30\u2009minutes). Reported barriers included language inaccessibility, researcher attitudes, limited family empowerment, time constraints, and lack of researcher flexibility. Facilitators included researcher flexibility, varied knowledge\u2010sharing formats, plain language use, qualitative impact measures, governance council creation, and revised public involvement implementation steps. Partners proposed a seventh standard: continuous review (of standards, co\u2010responsibility, and research aspects). A 26\u2010action implementation plan and a 6\u2010stage public involvement implementation model for cerebral palsy registries were co\u2010created.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interpretation<\/jats:title>\n                    <jats:p>The UK Standards for Public Involvement in Research proved an adequate guide for the BrCPR public involvement group. Identified barriers and facilitators guided group actions, leading to a public involvement implementation process grounded in partners' needs and perspectives.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/dmcn.70500","type":"journal-article","created":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T18:40:22Z","timestamp":1791139222000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Public involvement in the Brazilian Cerebral Palsy Register: An exploratory, sequential, mixed\u2010methods study"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0009-0008-6063-2604","authenticated-orcid":false,"given":"Luana Cristina","family":"da Silva","sequence":"first","affiliation":[{"name":"Graduate Program in Rehabilitation Sciences, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2067-5091","authenticated-orcid":false,"given":"Claire","family":"Kerr","sequence":"additional","affiliation":[{"name":"School of Nursing and Midwifery Queen's University Belfast  Belfast UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7077-3146","authenticated-orcid":false,"given":"Israt","family":"Jahan","sequence":"additional","affiliation":[{"name":"School of Health, Medical and Applied Sciences Central Queensland University  Rockhampton Queensland Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-2107-4287","authenticated-orcid":false,"given":"Raphael Fagundes Figueira","family":"Pinho","sequence":"additional","affiliation":[{"name":"Brazilian Cerebral Palsy Register Public Involvement Group, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-5199-8527","authenticated-orcid":false,"given":"Aline Lincoln","family":"Silveira","sequence":"additional","affiliation":[{"name":"Brazilian Cerebral Palsy Register Public Involvement Group, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6828-1636","authenticated-orcid":false,"given":"N\u00e1dia","family":"Badawi","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Alliance Research Institute, Specialty of Child and Adolescent, Health Sydney Medical School, Faculty of Medicine and Health The University of Sydney  Sydney New South Wales Australia"},{"name":"Grace Centre for Newborn Intensive Care Sydney Children's Hospital Network  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0661-4113","authenticated-orcid":false,"given":"Gulam","family":"Khandaker","sequence":"additional","affiliation":[{"name":"School of Health, Medical and Applied Sciences Central Queensland University  Rockhampton Queensland Australia"},{"name":"Central Queensland Hospital and Health Service  Rockhampton Queensland Australia"},{"name":"National Centre for Immunisation Research and Surveillance (NCIRS)  Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-4204-6479","authenticated-orcid":false,"given":"Gabriela Loren\u00e7oni","family":"Pauletti","sequence":"additional","affiliation":[{"name":"Physiotherapy Department, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6263-1818","authenticated-orcid":false,"given":"Egmar","family":"Longo","sequence":"additional","affiliation":[{"name":"Graduate Program in Physiotherapy Universidade Federal da Para\u00edba  Jo\u00e3o Pessoa Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4022-6261","authenticated-orcid":false,"given":"Mercedes","family":"Ruiz 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"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4312-0403","authenticated-orcid":false,"given":"Paula Silva de Carvalho","family":"Chagas","sequence":"additional","affiliation":[{"name":"Graduate Program in Rehabilitation Sciences and Physical\u2010Functional Performance, Faculdade de Fisioterapia Universidade Federal de Juiz de Fora (UFJF)  Juiz de Fora Brazil"},{"name":"CanChild, McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8977-8131","authenticated-orcid":false,"given":"H\u00e9rcules Ribeiro","family":"Leite","sequence":"additional","affiliation":[{"name":"Graduate Program in Rehabilitation Sciences, Escola de Educa\u00e7\u00e3o F\u00edsica, Fisioterapia e Terapia Ocupacional Universidade Federal de Minas Gerais (UFMG)  Belo Horizonte Brazil"},{"name":"CanChild, McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,4]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.15438"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41390\u2010025\u201003824\u20105"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.70149"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.14926"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen\u20102022\u2010071315"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.15798"},{"key":"e_1_2_9_8_1","unstructured":"Cerebral Palsy Alliance.Australian Cerebral Palsy Register 2025 Bulletin: Birth prevalence and trends in cerebral palsy birth years 1995\u20132018. 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Available from:https:\/\/www.nihr.ac.uk\/briefing\u2010notes\u2010researchers\u2010public\u2010involvement\u2010nhs\u2010health\u2010and\u2010social\u2010care\u2010research"},{"issue":"1","key":"e_1_2_9_15_1","doi-asserted-by":"crossref","DOI":"10.1186\/s40900-020-00188-4","article-title":"Designing a tool to support patient and public involvement in research projects: the Involvement Matrix","volume":"6","author":"Smits DW","year":"2020","journal-title":"Research Involvement and Engagement."},{"key":"e_1_2_9_16_1","unstructured":"UK Public Involvement Standards: Better public involvement for better health and social care[Internet].2022[cited 2026 Mar 24]. 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