Variables included in cerebral palsy registries globally: A scoping review

Abstract

Aim: To identify cerebral palsy (CP) variables collected in CP registries from high-income countries (HICs) and low- and middle-income countries (LMICs) to assist with the development of a regional CP registry relevant to the African region. Method: A systematic search of online databases to identify peer-reviewed publications and grey literature about CP risk-factor variables, using Ovid MEDLINE, Embase Ovid, CINAHL, and Google Scholar. Results: A total of 197 studies published from global CP registries between 1990 and 2023 were identified. CP registries both from HICs and from LMICs included variables on prenatal CP risk factors. LMIC registries focused more on socioeconomic factors (the physical structure of the family home [21.1%, n = 8, in LMICs vs 1.7%, n = 2, in HICs]). Prenatal modifiable and non-modifiable risk factors were emphasized in HICs. LMIC registries included more postnatal CP risk-factor variables than HIC registries, including history of postnatal jaundice (15.8%, n = 6, in LMICs vs 6.9%, n = 8, in HICs) and postnatal head trauma (10.5%, n = 4, in LMICs vs 5.2%, n = 6, in HICs). Interpretation: CP registries are currently more available in HICs than in LMICs. Differences in CP risk factors account for most of the differences in variables included in HICs and LMICs. Comparing variables used by CP registries in HICs and LMICs suggests the importance of understanding contextually relevant factors for regional registry design.