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New indicators to better monitor the most common childhood-onset motor disability

The JRC, as part of the European Platform on Rare Disease Registration, is operating the Central Registry of the European network for the surveillance of cerebral palsy
Dec 03 2021

Today is International Day of People with Disabilities. The JRC publishes a set of Public Health Indicators for better monitoring of healthcare needs in children with Cerebral Palsy in Europe.

Cerebral Palsy (CP) is the most common childhood-onset motor disability. It arises from a diverse range of causes and presents with a wide spectrum of disability.

Children with CP have multiple health care needs. Along with motor impairment leading to long-term functional limitations, they may have associated co-morbidities such as cognitive, sensory, communicative, and intellectual impairments, speech disturbance, epilepsy, and nutritional problems. This is why children with CP require multidisciplinary, comprehensive, and coordinated care for the continuous monitoring and management of their condition. 

The JRC, as part of the European Platform on Rare Disease Registration, is operating the Central Registry of the European network for the surveillance of cerebral palsy (SCPE). Each year data on children with Cerebral Palsy (CP) are routinely collected by population-based registries and reported to the JRC-SCPE central database in a harmonised way. 

The scope behind this collection is to disseminate knowledge about CP through epidemiological data, develop best practice in monitoring trends in CP and provide a framework for collaborative research.

Using these data, the SCPE network now established a set of indicators that can help analysing the patient population in Europe. They also provide information for policymakers who are developing healthcare strategies and monitoring policy implementation. 

The six indicators were designed to inform on the following areas: a) widespread of CP in Europe, b) disability, c) access to services, d) preventive health strategies. They are available on website and will be updated on an annual basis.