{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T14:13:58Z","timestamp":1788444838331,"version":"build-2803163510"},"reference-count":40,"publisher":"BMJ","issue":"7","license":[{"start":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T00:00:00Z","timestamp":1785369600000},"content-version":"unspecified","delay-in-days":29,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["APP2026176 and APP2009873"],"award-info":[{"award-number":["APP2026176 and APP2009873"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100022099","name":"Cerebral Palsy Alliance","doi-asserted-by":"publisher","award":["PHD01223 and PRG00326 and ERG01421"],"award-info":[{"award-number":["PHD01223 and PRG00326 and ERG01421"]}],"id":[{"id":"10.13039\/501100022099","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2026,7,19]]},"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Cerebral palsy (CP) is the most common physical disability in childhood. Although an estimated 60 000 children live with CP in Vietnam, there is no national register to systematically collect data on the prevalence, risk factors or clinical profile of CP or service access. This paper outlines the protocol for establishing the Vietnam Cerebral Palsy Register (VCPR), a national register which will be co-designed by researchers and clinicians in collaboration with the Cerebral Palsy Family Association of Vietnam (CPFAV). The VCPR aims to inform service planning, policy and research through comprehensive, community-informed data collection.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>The VCPR will be developed by a consumer-clinician-researcher partnership. Initially, the VCPR will harmonise and pool data from two sources: (1) a hospital-based cohort of 765 children with CP identified at the National Children\u2019s Hospital in Hanoi (NCH) in 2017, and (2) members of the CPFAV, comprising over 4300 children with CP aged &lt;18 years from 63 CPFAV hubs across Vietnam. Subsequently, standardised data for inclusion in the VCPR will prospectively be collected on children newly diagnosed with CP at NCH and other healthcare settings and on children newly referred to CPFAV.<\/jats:p>\n                    <jats:p>Data will be collected using an adapted version of the Australian CP register questionnaire through a combination of structured caregiver interviews, clinical assessments using validated tools and medical record review. Key demographic variables and information on CP type, motor severity\u2014using the Gross Motor Function Classification System or Manual Ability Classification System, associated impairments (eg, vision, hearing, intellectual disabilities), condition at birth, congenital or other infections, vaccination, educational and nutritional status of the child, access to rehabilitation and family-related factors such as monthly household income, parental education and occupation and maternal health during pregnancy will be collected. The VCPR will contribute data to the Global Low- and Middle-Income Country Cerebral Palsy Register.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>Ethics approval has been obtained from Vietnamese and Australian institutions, whose role is to provide ethical oversight and research governance for the PhD project supporting the VCPR. Written informed consent will be obtained from primary caregivers for data collection, secure storage, access to relevant health records, verification with health professionals and future research contact, with no identifiable data disclosed.<\/jats:p>\n                    <jats:p>Involvement of people with lived experience of CP is central to the VCPR and leaders and members of the CPFAV will contribute to co-design, governance, participant engagement and dissemination. Findings will be shared regularly with families, clinicians, policymakers and researchers through CPFAV communications, peer-reviewed publications, national and international conferences and the VCPR website to inform equitable service planning, policy and future research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2026-116376","type":"journal-article","created":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T12:45:29Z","timestamp":1785415529000},"page":"e116376","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["Vietnam Cerebral Palsy Register: protocol for co-design of a national register with people with lived experience of cerebral palsy"],"prefix":"10.1136","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9421-5517","authenticated-orcid":false,"given":"Thi Hong Hanh","family":"Khuc","sequence":"first","affiliation":[{"name":"School of Health, Medical and Applied Sciences, Central Queensland University, Rockhampton, Queensland, Australia"},{"name":"Faculty of Medical Technology, Phenikaa School of Medicine and Pharmacy, Phenikaa University, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Minh Chau","family":"Cao","sequence":"additional","affiliation":[{"name":"Faculty of Medical Technology, Phenikaa School of Medicine and Pharmacy, Phenikaa University, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tasneem","family":"Karim","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Alliance Research Institute, Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thi Lan Anh","family":"Dinh","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Family Association Vietnam, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thi Huong Giang","family":"Nguyen","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation, National Children\u2019s Hospital, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3673-7288","authenticated-orcid":false,"given":"Thi Van Anh","family":"Nguyen","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation, National Children\u2019s Hospital, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Minh Chau","family":"Pham","sequence":"additional","affiliation":[{"name":"Faculty of Medical Technology, Phenikaa School of Medicine and Pharmacy, Phenikaa University, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Van Bang","family":"Nguyen","sequence":"additional","affiliation":[{"name":"Medical Faculty, Hoa Binh University, Hanoi, Viet Nam"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1106-0108","authenticated-orcid":false,"given":"Lal","family":"Rawal","sequence":"additional","affiliation":[{"name":"School of Health Medical and Applied Sciences, Central Queensland University, Sydney, New South Wales, Australia"},{"name":"S.P.O.R.T. Research Cluster, Central Queensland University, Rockhampton, Queensland, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Mcintyre","sequence":"additional","affiliation":[{"name":"Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, 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":"National Centre for Immunisation Research and Surveillance, Westmead, New South Wales, Australia"},{"name":"Central Queensland Public Health Unit, Central Queensland Hospital and Health Service, Rockhampton, Queensland, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6501-5487","authenticated-orcid":false,"given":"Elizabeth Jane","family":"Elliott","sequence":"additional","affiliation":[{"name":"Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia"},{"name":"Kid\u2019s Research, The Sydney Children\u2019s Hospitals Network, Sydney, New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2026,7,30]]},"reference":[{"key":"2026090306254517000_16.7.e116376.1","doi-asserted-by":"crossref","unstructured":"Rosenbaum P , Paneth N , Leviton A , et al . 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Available: http:\/\/www.ngocentre.org.vn\/content\/60000-vietnamese-children-suffer-cerebral-palsy [Accessed 31 Jul 2024]."},{"key":"2026090306254517000_16.7.e116376.24","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2017-017742","article-title":"Protocol for hospital based-surveillance of cerebral palsy (CP) in Hanoi using the Paediatric Active Enhanced Disease Surveillance mechanism (PAEDS-Vietnam): a study towards developing hospital-based disease surveillance in Vietnam","volume":"7","author":"Khandaker","year":"2017","journal-title":"BMJ Open"},{"key":"2026090306254517000_16.7.e116376.25","unstructured":"L.TH.H . 60,000 vietnamese children with cerebral palsy. Available: https:\/\/tuoitre.vn\/60000-tre-em-vn-mac-benh-bai-nao-387446.htm [Accessed 25 Nov 2024]."},{"key":"2026090306254517000_16.7.e116376.26","doi-asserted-by":"crossref","first-page":"3081","DOI":"10.1080\/09638288.2020.1854872","article-title":"Data on cerebral palsy in Vietnam will inform clinical practice and policy in low and middle-income countries","volume":"44","author":"Karim","year":"2022","journal-title":"Disabil Rehabil"},{"key":"2026090306254517000_16.7.e116376.27","doi-asserted-by":"crossref","DOI":"10.3390\/nu11092132","article-title":"Nutritional Status of Children with Cerebral Palsy-Findings from Prospective Hospital-Based Surveillance in Vietnam Indicate a Need for Action","volume":"11","author":"Karim","year":"2019","journal-title":"Nutrients"},{"key":"2026090306254517000_16.7.e116376.28","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2023-075820","article-title":"Associated impairments among children with cerebral palsy: findings from a cross-sectional hospital-based study in Vietnam","volume":"14","author":"Khuc","year":"2024","journal-title":"BMJ Open"},{"key":"2026090306254517000_16.7.e116376.29","doi-asserted-by":"crossref","unstructured":"Khuc TTH , Karim T , Cao MC , et al . 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