Vietnam Cerebral Palsy Register: protocol for co-design of a national register with people with lived experience of cerebral palsy.

Authors

Thi Hong Hanh Khuc, Minh Chau Cao, Tasneem Karim, Thi Lan Anh Dinh, Thi Huong Giang Nguyen, Thi Van Anh Nguyen, Minh Chau Pham, Van Bang Nguyen, Lal Rawal, Sarah Mcintyre, Gulam Khandaker, Elizabeth Jane Elliott, Cerebral Palsy Family Association Vietnam

Published in

BMJ open. Volume 16. Issue 7. Pages e116376. Jul 30, 2026. Epub Jul 30, 2026.

Abstract

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.
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's Hospital in Hanoi (NCH) in 2017, and (2) members of the CPFAV, comprising over 4300 children with CP aged <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.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-using 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.
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.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.

PMID:
42532561
Bibliographic data and abstract were imported from PubMed on 31 Jul 2026.

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