The mission of the SCPE network is to learn more about the cerebral palsies from surveillance of trends in prevalence rates, severity, associated impairments and secondary disabilities.
By using population-based surveys and registers across Europe the SCPE network aims to:
• promote harmonization and quality of definition and description of the cerebral palsies
• develop collaborative epidemiological and clinical research projects about the cerebral palsies, attracting young researchers to the field, in partnership with individuals with cerebral palsies and their carers
• disseminate knowledge about the cerebral palsies for individuals with cerebral palsies, health care professionals and key stakeholders, including via academic publications
• develop best practice in monitoring trends in the cerebral palsies
• raise standards of care equitably for all people with cerebral palsies through the life span and thus improve outcomes and quality of life for individuals with cerebral palsies and their carers
The SCPE network aims to improve the health and wellbeing of children and young people with the Cerebral Palsies (CP), the most frequent and severe motor impairments affecting children and young people (CYP), in all countries within Europe.
It aims to do this by developing guidance on best practice for the care of CYP with CP for use by both health professionals and lay carers (e.g. parents), and by improvements in the collection, recording, description and use of clinical and epidemiological data.
A common vocabulary will improve assessment of variations in the prevalence, management and severity of the group of conditions included in CP, permitting the development of national and local strategies to monitor and reduce health inequalities among CYP with CP.
In addition, the knowledge and experience gained from applying this work across Europe drives SCPE to establish international collaborations in the CP field with similar networks from other regions of the world.
Based on its memorandum of understanding, SCPE produced a quadrennial plan for the period 2013-2016. This multi-annual plan is structured in five domains of activity.: Sustainability of the network, Methodology, Research, Public health, International. Under each domain, a series of activities are listed. The programme of work for each year is organised by prioritising and seeking funds for one or two activities per domain.
SCPE QUADRENNIAL PLAN (2013-2016)
SUSTAINABILITY of NETWORK
• Maintain and develop central database (electronic registration and analysis)
• Harmonisation, Uniformity of definitions
• Data quality assurance and validation assessment
• Encourage the development of existing and new registers
• Ensure SCPE maintains its awareness of EU developments on reference networks and networks of excellence
• Developing partnership with individuals and organizations representing individuals with cerebral palsy and their carers
• Maintain and develop the website
• Promoting collection of data concerning young adults with CP
• Improving timely submission of high quality, complete datasets
• Register at earlier age
• Exploring representativeness and generalizability of data
• Ethics of consent
• Train young researchers
• Economic studies
• Link to big themes such as early interventions, aetiology in term births etc
• Rare diseases presenting as cerebral palsies
o Variations in prevalence, healthcare, health outcomes
o Report more recent data
• Disseminating knowledge to parents and professionals
• Maintain contact with current international collaborators, and develop common activities (e.g. international consensus, research projects with Australia network of CP registers, US network of CP registers-CDC).
• Explore links with Brazil, Russia, India and China
The SCPE network developed a quadrennial work programme for the period 2013-2016. Among the list of activities of the 4-year programme, a limited number of activities were selected for funding in the 2014 work programme. The selected activities (numbered 1 to 10 on table page 17) are grouped in four domains (A-D), detailed in Supporting Document 5, and described below:
• Sustainability of the Network (Domain A: Activities 1, 2, 8, 9, 10). The basic pillars that support SCPE collaborative work are the CDB, the website and the annual plenary meeting.
- To maintain and develop SCPE central database (Act. 1, 2):
Individual registers of the network have an electronic registration and they have to submit data on cases (children with cerebral palsy) and denominators (live birth characteristics). The 2014 data submission will concern the children with cerebral palsy born in 2005, and the live births characteristics for years 2004-2006. Database management working time is required for this, as well as support to the individual registers for the data extraction and data transfer from their local register database. [Budget for CDB: 18221 € for CDB]
- To maintain and update SCPE website and dissemination strategy (Act. 8, 9):
Leaflet (2) and newsletters (4, and new web contents will be produced. Two language versions will be added. Website hosting, maintenance, administration, and html coding working time is required for this, as well as support to the SCPE members responsible for a language version.
[Budget for website and dissemination: 11221 €]
- To coordinate SCPE activities, including meetings (Act.10)
[Budget coordination: 15000€ staff hired for coordination; Travel expenses: 15000€ June workshop; 20500€; November plenary meeting]
• Consensus on a Classification for Neuroimaging findings in CP (Domain B: Actvities3,4).
The cerebral palsies (CP) is an umbrella term referring to a group of conditions with different aetiologies.
The aim is to develop an international consensus on the classification of neuroimaging findings in children with CP on the basis of previous SCPE work. This is still missing and it will facilitate comparisons of rates, issuing clinical recommendations, and international studies. - Do we need an international consensus on neuroiamging classification? Literature review, online survey, reliability exercise (Act.3)
- Consensus classification: a modified Delphi process followed by a consensus meeting (at the plenary)(Act.4).
[Budget for Neuroimaging: 8000€]
• Develop and test collaboration with health economist in EU and EEA countries (Domain C: Activities 5,6)
CP is a life-long condition. In addition to the treatment costs, many of those with cerebral palsy require support with activities of daily living and have special educational needs. Additional costs relate to the welfare support, housing adaptations necessary, and the costs of informal caring arrangements.
- What is the economic impact of CP across Europe (Act.5). A report summarising what is currently known.
- A research protocol to develop and validate a costing tool for CP (Act. 6). By bringing together Health Economists, CP professionals, persons with CP/carers in a workshop, the costs associated with CP can be identified and a protocol for an EU-wide study looking at the economic impact of CP will be developed.
[Budget for Health Economy: 4000€]
• Public health: Monitor trends, determinants and outcomes in individuals with CP (Domain D: Activity 7).
New analysis of SCPE CDB will be promoted through a coordinated process that will include circulation of protocols of planned analysis, discussion of preliminary analysis at the plenary meeting, discussion of drafts papers between co-authors and final draft circulated to SCPE members before submission. The analysis and preparation of publications from SCPE CDB requires highly skilled and dedicated contributions. Two papers should be submitted in 2014
[Budget for Public Health, 8000€].