Pediatrics · Medical Literature
Vietnam Cerebral Palsy Register: protocol for co-design of a national register with people with lived experience of cerebral palsy
Abstract
Introduction 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. Methods and analysis 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 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 and dissemination Ethics approval has been obtained from Vietnamese and Australian institutions, whose role is to p
Clinical relevance
Cerebral palsy (CP) is the most common physical disability of childhood, yet an estimated 60,000 children living with CP in Vietnam have no national registry to systematically document prevalence, risk factors, clinical profiles, or service access. This protocol addresses a critical surveillance gap in a lower-middle-income country (LMIC) context, where CP prevalence in LMICs is estimated to be four to six times higher than in high-income countries but reliable data remain scarce. Clinicians and policymakers caring for children with CP in Vietnam and analogous LMIC settings need this evidence base to plan equitable, needs-driven rehabilitation services.
Key findings
1. Estimated burden: Approximately 60,000 children are living with CP in Vietnam, with CP comprising 30–40% of all childhood physical disability in the country, yet no national register existed prior to this initiative. 2. Existing hospital cohort: The foundational dataset comprises 765 children with CP prospectively identified at the National Children's Hospital (NCH) in Hanoi in 2017, providing the first structured hospital-based clinical profile of CP in Vietnam. 3. Community cohort: The Cerebral Palsy Family Association of Vietnam (CPFAV) contributes over 4,300 children with CP as a second pooled data source, substantially expanding the register's demographic and geographic reach beyond tertiary hospital attendees. 4. Immunization gap documented in the NCH cohort: 82.7% of children with CP were fully immunized per the Vietnamese Expanded Programme on Immunization schedule, compared with 96.4% in the general child population — representing a clinically meaningful immunization disparity in this vulnerable group. 5. Outcome and risk-factor domains: The VCPR will capture CP subtype, topography, motor severity via GMFCS/MACS, associated impairments (vision, hearing, intellectual disability), perinatal and postneonatal risk factors, nutritional and educational status, rehabilitation access, and socioeconomic determinants including household income and maternal health — enabling multivariable risk-factor analyses not previously possible in Vietnam. 6. Global registry alignment: The VCPR will contribute data to the Global LMIC Cerebral Palsy Register, enabling internationally harmonised, cross-country comparisons of CP epidemiology and outcomes using a validated, adapted version of the Australian Cerebral Palsy Register questionnaire. NOTE: This is a protocol paper; inferential statistics, effect sizes, confidence intervals, p-values, and NNT/NNH are not applicable and were not reported in the abstract.
Practice implications
Clinicians managing children with CP in Vietnam and comparable LMIC settings should anticipate that the VCPR will generate the first nationally representative data to guide evidence-based service planning, including identifying which CP subtypes and severity strata are most underserved by existing rehabilitation infrastructure. The documented immunization gap (82.7% vs. 96.4% fully immunized) signals an immediate, actionable opportunity for clinicians and public health workers to integrate vaccination review into every CP encounter and advocate for targeted outreach to this population. Participation in co-designed, consumer-informed registries — engaging caregiver associations as co-designers rather than passive data sources — represents a methodological model that specialist teams in LMICs should adopt to ensure the register captures community-defined priorities, improves data completeness, and produces findings that are actionable at both the clinical and policy levels.