An international survey of cerebral palsy registers and surveillance systems

Abstract

AIM To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration. METHOD Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted. RESULTS Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration. INTERPRETATION Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.

A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 1.0 recommendations

“…CP registers throughout the world were used as a starting point . Where there was full agreement amongst registers, those items were included and measured in the same way.…”

Diagnosing cerebral palsy in full‐term infants

“…Furthermore, this group has relatively higher rates of normal neuroimaging . However, hypotonic CP is included as a registry field in only 54% of programmes surveyed and is not defined consistently . Further work is needed to define the overlap in those with dysmorphic features and low tone.…”

Epidemiology of cerebral palsy in Bangladesh: a population‐based surveillance study

“…The main aims of these initiatives are to monitor incidence and prevalence of CP, understand comorbidities and risk factors, design and evaluate preventative strategies, and monitor service delivery . To the best of our knowledge, there are currently 38 established CP registers/surveillance programmes worldwide, none of which are in LMICs …”