The Surveillance of Cerebral Palsy in Europe (SCPE) was established in 1998 as a collaboration of professionals and researchers working with cerebral palsy (CP) registries, bringing together paediatricians, paediatric neurologists, epidemiologists and therapists from across Europe.
The aim is to disseminate knowledge about CP through epidemiological data, to develop best practice in monitoring trends in CP, to raise standards of care for individuals with CP, to inform for service planning, and to provide a framework for collaborative research.
Why a European registry of children with CP?
It is important to measure trends in prevalence over time and to gain a better understanding of the causes of CP. Each registry collects information about all children born with CP within a region, and sends a common dataset to a central database. Data is then pooled and specific analyses are performed.
The collaboration is examining variations in clinical practices across Europe, access to health care and further refinement of how children with CP are described. As of 2017, the SCPE Central Database contains anonymized population data on more than 20.000 children with CP.
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The SCPE is an unofficial voluntary non-profit organisation. There are three possible qualifications for a membership.
Type (a) partner: Any European registry or survey of children with CP fulfilling all the following criteria:
- population-based registry that covers a geographically defined area, with a birth rate of at least 3,000 births per year
- uses multiple sources of ascertainment
- can comply with the SCPE requirements in terms of data collection, classification of CP, and quality assurance
- will transmit the relevant data to the SCPE Central Database in a timely manner
The partner is the registry, and is usually represented by the registry leader.
Type (b) partner: An individual professional with skills relevant to individuals in a neuro-developmental field such as clinical, public health or epidemiological expertise. Type (b) partners promote the use of the SCPE Central Database in collaborative research studies external to SCPE.
Type (c) partner: Any association, non-governmental organisation or network (including parent organisations, institutions or professional organisations) with an interest in the work performed by SCPE. The partner is the organisation or network, and is usually represented by the organisation/network leader, or an agreed representative.
SCPE structure and functioning
The SCPE Board of Members consists of all Type (a) partners.
The Management Committee is a joint European Commission Joint Research Centre (JRC)-SCPE Committee whose Terms of Reference are to manage and coordinate the SCPE, to ensure the sustainability and development of the SCPE Central Database, to facilitate the development of research projects and the dissemination of the work on CP in Europe, to maintain collaborations with partners working on CP, and to promote the work and achievements of the SCPE.
Three Working Groups are in charge of the development and achievements of the SCPE:
- the Data Working Group, oversees decisions, rules and amendments for data collection, and promoting and ensuring data quality
- the Website and Dissemination Working Group, oversees decisions and rules for the content of the website, and dissemination of the work
- the Scientific Activities Working Group, oversees the development of epidemiological surveillance and public health research as well as clinical research based on CP registries.
Chair: Catherine Arnaud, France
Deputy-Chair: Mary Jane Platt, United Kingdom
Deputy-Chair: Guro L. Andersen, Norway
Data Group Leader: Inge Krägeloh-Mann, Germany
Website & Dissemination Group Leader: Sandra Julsen Hollung, Norway
Scientific Activities Group Leader: Kate Himmelmann, Sweden
Contact us at firstname.lastname@example.org
JRC-SCPE Central Registry
The JRC-SCPE Central Registry is located in the Health in Society Unit (F.1), Directorate F – Health, Consumers and Reference Materials, European Commission Joint Research Centre (Ispra, Italy).
The role of the Central Registry is to:
- Maintain and further develop the SCPE Central Database
- Securely manage the data from all registries
- Analyse data with respect to data quality and routine statistical monitoring
- Maintain relationships with single registries
- Support and participate in the coordinating activities
- Organise meetings (annual network meetings, Management Committee and various Working Groups) and training
- Disseminate network's results (website, reports, JRC-SCPE newsletter, leaflets).
Contact us at JRC-SCPE@ec.europa.eu
EU Platform for Rare Diseases Registration
The European Platform on Rare Diseases Registration (EU RD Platform) is being developed by DG JRC in collaboration with DG SANTE with the objective to set European-level standards for data collection and data sharing in the field of rare diseases. The EU RD Platform will provide a source of information on all rare disease patient data with large transnational European coverage.
One main function of the EU RD Platform is to provide interoperability for the > 600 existing RD registries in Europe. In addition, an inventory if RD registries will be established, a metadata registry will be created and guidelines and tools to support existing and the creation of new registries will be developed.
The second function of the EU RD Platform was conceived to offer a sustainable solution for two large European surveillance networks: EUROCAT (European surveillance of congenital anomalies) and SCPE (Surveillance of Cerebral Palsy in Europe). For both networks the European level-coordination activities and the central databases were transferred to the JRC, where the JRC-EUROCAT and JRC-SCPE Central Registries are now located and operational. For these two particular networks the EU RD Platform function also as data repository.