Surveillance of cerebral palsy in Europe: prevalence rates in chilhood populations, trends over time and risk factors

Información del proyecto

Identificador del acuerdo de subvención: BMH4983701

Proyecto cerrado

Fecha de inicio 1 Abril 1998

Fecha de finalización 31 Marzo 2001

Financiado con arreglo a

• Specific research, technological development and demonstration programme in the field of biomedicine and health, 1994-1998

Coste total

Sin datos

Aportación de la UE

Sin datos

Coordinado por

UNIVERSITE JOSEPH FOURIER - GRENOBLE 1
France

Objetivo

Objectives:
* to harmonize data collection on children with cerebral palsy, using a standard definition and an agreed minimum data set including perinatal risk factors for cerebral palsy.
* to compare birth cohort prevalence rates for cerebral palsy over time, between populations, and within subgroups (eg. low birthweight) and to examine the extent to which variations can be associated with differences in prevalence of risk factors.
* to provide protocols for future collaborative studies using the framework developed.

Cerebral palsy (CP) is one of the most commonly occurring disability in young children, making heavy demands on health, educational and social services. It occurs in 1 to 2 per 1000 live births, although in some high risk groups, such as babies born very early or very small, the rate may be as high as 80 per 1000live births. Both children and adults with CP draw on additional services which may range from specialised help at home or at school, to permanent residential care. In order to monitor trends and variations of rates of cerebral palsy, it is necessary for areas in different countries to collaborate. Variations in prevalence rate of cerebral palsy may be due to differences in definition of cerebral palsy, in the completeness of ascertainment and in the survival rate of low birth weight babies. Any remaining difference in prevalence between different populations, after standardising for these factors, may be associated with differences in obstetric and neonatal health care policies. The objective of this proposal is therefore to develop a framework, which will provide reliable estimates on cerebral palsy in children in Europe, on changing prevalence rates, particularly within birth weight groups. This project cannot be achieved at a national level due to the need of large amount of data for whom planned to analyse prevalence rates and trends overtime in subgroups of populations.

The first objective is to harmonise data collection on children with cerebral palsy, using a standard definition and an agreed minimum data set including perinatal risk factors for cerebral palsy. Prior to pooling or comparing data on children with CP across centres and countries, a standard system for describing children with CP needs to be agreed between paticipants, and information on mortality and potentially adverse perinatal events needs to be available in population. The population base which would be covered by the different participating centres will reach more than 250 000 live births per year, from nine different countries (DE, UK, NL, IT, FR, SE, DK, IE, CH) and 14different centres. Based on the experience gained, guidelines for inclusion/exclusion criteria, standard forms for describing children with CP, and guidelines for establishing and maintaining a cerebral palsy register as well as teaching courses might be proposed. A central common database will be compiled. It will then be possible to achieve the second objective, that is, to compare birth cohort prevalence rates for cerebral palsy over time, between populations, and within subgroups (e.g. Iow birth weight) and to examine the extent to which variations can be associated with differences in prevalence of risk factors. Many reports from different countries have shown an increase in CP prevalence during the last decades, which is especially due to the rise in CP prevalence in preterm despite increasing sophistication of obstetric and neonatal intensive care. It is therefore important to analyse birth-weight specific prevalence rates and to examine the relationship of these to birth weight specific mortality rates. Each centre will be asked to provide information about children with CP born since 1980. Reports of cerebral palsy rates in Europe, with a particular emphasis on rates of cerebral palsy among low birth weight babies (<1500g), are expected about come.

The third Objective will be to create a computerized register of CP research projects, using a systematic reviewing process to assess quality. In addition, protocols will be developed for future collaborative work using the framework developed. A register of CP research projects may provide details about research projects on CP children, and should lead to more efficient use of the limited resources available for research on this theme. At the same time it will be necessary to assess clinical and ethical requirements for developing collaborative studies. Then drawing up of protocols might be discussed within subgroups of interested centres, and consensus on protocols may be obtained at the end the three years of the project. Children with cerebral palsy impose heavy financial and emotional burdens on families. Research, which addresses the extent of the condition and improves our understanding of its underlying causes with the possibility of developing preventive strategies, will clearly be of benefit to affected individuals, to families as well as to society as a whole.

Ámbito científico (EuroSciVoc)

• ciencias sociales › sociología › gobernanza › servicios públicos
• ciencias sociales › sociología › demografía › mortalidad
• ciencias naturales › informática y ciencias de la información › base de datos

Programa(s)

• FP4-BIOMED 2 - Specific research, technological development and demonstration programme in the field of biomedicine and health, 1994-1998

Tema(s)

• 6.1 - Health education and prevention, primary care

Convocatoria de propuestas

Datos no disponibles

Régimen de financiación

CON - Coordination of research actions

Coordinador

UNIVERSITE JOSEPH FOURIER - GRENOBLE 1

• Aportación de la UE: Sin datos
• Dirección: Domaine de la Merci ; 38706 LA TRONCHE ; Francia
• Coste total: Sin datos