The European Commission’s Joint Research Centre (JRC) is developing the EU Platform on Rare Diseases Registration. An important component of the Platform is the Central Registry of the Network for the Surveillance of Cerebral Palsy in Europe (SCPE), which was recently transferred to the JRC.
The Annual Plenary Meeting of the SCPE was organised by the JRC from 16th to 18th October 2017. A significant part of the programme was devoted to the discussion of indicators for measuring public health impact of cerebral palsy.
Cerebral palsy (CP) is the term for a range of movement difficulties caused by non-progressive brain injury or malfunctions. It is the cause of significant physical impairment in children and is often associated with difficulties of vision, hearing, intellect, communication and feeding. The overall CP rate in Europe is around 2 per 1,000 live births.
The Network for Surveillance of Cerebral Palsy in Europe (SCPE) was established in 1998, bringing together paediatricians, paediatric neurologists, epidemiologists and therapists working with CP registries across Europe.
The network’s objectives are:
- to collect data on CP in a systematic way;
- to disseminate knowledge about CP through epidemiological data;
- to develop best practice in monitoring trends in CP;
- to raise standards of care for children with CP; and
- to provide information for health service planning in Europe.
According to the Administrative Arrangement between JRC and DG SANTE on the 'Development and maintenance of the EU Platform on Rare Diseases Registration', the JRC has been operating the SCPE Central Registry since 2016. This work includes the network’s European-level coordinating activities and the maintenance of the SCPE Central Database.
The JRC-SCPE Annual Plenary Meeting was hosted for the third time by the JRC. The main aim of the meeting was to present and discuss the analysis of the new data sent annually by the registries to the JRC-SCPE Central Registry.
The JRC-SCPE Annual Plenary Meeting was also an occasion to discuss all types of network activities (scientific collaborations, publications, new research projects). It gave the JRC the opportunity to meet the registry leaders, discuss with them the new setting of the Central Registry at the JRC, and to motivate them for future collaboration.
A large part of the meeting was dedicated to the new health indicators that are being developed by the SCPE network in collaboration with JRC for measuring public health impact of CP. The indicators are based on reliable and comparable data compiled in the JRC-SCPE Central Database. Once finalised, the definition of health indicators will be published and disseminated in the scientific community. The indicators calculated on the basis of SCPE data will be made publically available on the JRC-SCPE website and updated annually.
Read more: Martin S., Kinsner-Ovaskainen A., De La Cruz F., Lanzoni M., Nicholl C. Transfer of the Common Database and coordinating activities of SCPE to the JRC: SCPE: network of population-based registries for the epidemiological surveillance of cerebral palsy in Europe. (2016) JRC Technical report JRC105017
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- Publication date
- 19 October 2017