Title: 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
Publisher: Publications Office of the European Union
Publication Year: 2016
JRC N°: JRC105017
ISBN: 978-92-79-64658-4 (print)
978-92-79-64657-7 (pdf)
ISSN: 1018-5593 (print)
1831-9424 (online)
Other Identifiers: EUR 28367 EN
OP LB-NA-28367-EN-C (print)
OP LB-NA-28367-EN-N (online)
URI: http://publications.jrc.ec.europa.eu/repository/handle/JRC105017
DOI: 10.2788/013124
Type: EUR - Scientific and Technical Research Reports
Abstract: In the framework of implementing European Commission’s strategy in the field of rare diseases, the Directorate-General Joint Research Centre (JRC) and the Directorate-General for Health and Food Safety (DG SANTE) signed in December 2013 the Administrative Arrangement (AA) on the ‘Development and Maintenance of the European Platform on Rare Diseases Registration’. One objective of the AA is the transfer of the European-level coordination activities of SCPE to the JRC. SCPE is a network of population-based registries for the surveillance of cerebral palsy (CP) active since 1998. Currently it has 23 active members in 20 EU/EFTA countries. SCPE promotes quality and harmonization of CP definition/description, develops collaborative epidemiological and clinical research about CP, disseminates knowledge for patients, health care professionals and key stakeholders, develops best practice in monitoring trends in CP and raises standards of equitable care for people with CP. All this improves outcomes for individuals with CP. Dissemination of this evidence-based information to policy makers is helpful to facilitate provision of appropriate, accessible, cost-effective care management programmes aimed to improve the quality of life for children and young people with CP and for their caregivers. In order to offer a sustainable solution for the continuation of the SCPE activities, to secure the results of former work and to keep the network functioning, it was agreed that SCPE becomes part of the European Platform for Rare Diseases’ Registration being developed at the JRC, since the diseases/conditions it deals with belong to the category 'rare'. This report presents the preparation phase, the negotiations and the procedures carried out for the effective transfer of the SCPE Central Registry including the central database and the coordinating activities to the JRC. The different types of activities and the involvement of different services (legal, IT, information security, and procurement) in a concerted action are detailed. The establishment of the new JRC-SCPE Central Registry (CR) located at the JRC, Directorate F – Health, Consumers and Reference Materials – Unit F1 - Health in Society Unit, corresponds to the ‘data repository’ function of the Rare Diseases Platform. The CR activities including collection of data from the registries, data management, communication with the registries, production of dissemination materials, and management of the website are described. In addition, the role and functioning of the new joint JRC-SCPE Management Committee and JRC’s role in supporting also other activities of the network (network Annual Plenary meetings, SCPE Working Groups) are presented. The accomplishment of the transfer is a milestone in the development of the European Platform on Rare Diseases Registration.
JRC Directorate:Health, Consumers and Reference Materials

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