Public health indicators for cerebral palsy: a European collaborative study of the Surveillance of Cerebral Palsy in Europe network

Public health indicators (PHIs) play an increasingly important role in health policy decision-making. Although cerebral palsy (CP) is the most common physical disability in children, its impact at population level has not been systematically measured so far. In the present paper we propose six PHIs for CP designed to annually document the extent of CP in the community, the burden of this condition, access to health services and preventive health strategies, and to report on the latest updated estimations using population-based data routinely collected by European CP registries and managed by the JRC-SCPE Central Registry, which is part of the European Platform on Rare Disease Registration. We show that population-based CP registries can provide data that are relevant for generating key outcomes of interest at the population level, thus potentially contributing to improving public health policies for children with disabilities.

ARNAUD Catherine;  EHLINGER Virginie;  PERRAUD Annie;  KINSNER-OVASKAINEN Agnieszka;  KLAPOUSZCZAK Dana;  HIMMELMANN Kate;  PETRA Marianna;  RACKAUSKAITE Gija;  LANZONI Monica;  PLATT Mary.Jane;  DELOBEL-AYOUB Malika; 

2023-11-13

WILEY

JRC130122

0269-5022 (online),   

https://onlinelibrary.wiley.com/doi/epdf/10.1111/ppe.12950,    https://publications.jrc.ec.europa.eu/repository/handle/JRC130122,   

10.1111/ppe.12950 (online),