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European Autism Information System [EAIS] [2005112] - Project
General objectives

To improve the quality of life of children affected by ASD, the following strategic objectives will be considered:
To improve information availability on ASD (Surveillance System)
To contribute to improving accessibility of children effected by ASD to appropriate treatment

Strategic relevance and contribution to the public health programme

Health information strand. Developing strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats, including gender specific health threats and rare diseases.
The overall strategy of the project to be implemented by conducting an initial analysis of the current surveillance of ASD and analysing the use of different case definitions in Europe. A network of professionals and stakeholders in the field of ASD to be established (the European Autism Alliance - EAA) including a Scientific Advisory Panel. Using the information from the initial analysis and with the expertise and contributions of the EAA,including the numerous collabrating partners in this project, recommendations for a common European information system on ASD to be made and validated in a pilot study. This to provide a starting point for systematic and consistent indicators in the future. A characterisation of the current situation of ASD in Europe to be designed and piloted as part of the project. The strategy for strengthening early diagnosis to be implemented by evaluating all available tools and evidence-based arguments, then proposing and validating a harmonised tool for early diagnosis of ASD across Europe. The strategy of this project also contemplates education and training packages for health personnel and an awareness-raising campaign to enhance both professional and public contributions to the main objective of this project, which is to improve the quality of life of children affected by ASD.

Methods and means

To develop a European network of professionals involved in Autism (WP4), key concerned institutions in Europe to be identified and consolidated in a sustainable Association (European Autism Alliance - EAA) through a workshop at project commencement (develop a statute, establish a Scientific Advisory Panel). The EAA to facilitate dialogue through a website and yearly workshops and to develop a continuously updated database of concerned professionals in Europe, making this information available to EAA members and the general public. To assist the continuing professional education of those working in the field of ASD and to ensure consistency of diagnosis amongst professionals, an education and training platform to be developed. This to occur through electronic distance learning (WP5), financed initially by the project and later sustained by the EAA, and by means of newsletters, distributed by internet. The content to derive from the flow of information from WP6, WP7 and WP8. A review of existing ASD surveillance in Europe to be carried out in WP6. This information to be analysed and gaps to be identified and addressed, including the development of a functional common case definition and recommendations for a common European data collection system. A pilot study to be conducted to evaluate recommendations and validate data. The system can then be commissioned and those accessing it to be trained on the education and training platform (WP5). A research study to be designed to estimate the prevalence and financial burden of ASD in Europe. This is a relevant action as there is no such existing Europe-wide information at present and such a study requires thorough planning for implentation after the current project, with a pilot study for both elements of ASD characterisation being carried out to validate the study design as part of this project (WP7). Increased levels of early diagnosis are crucial to successful surveillance of ASD. All available tools for early diagnosis to be evaluated and evidence-based arguments to be proposed to operate from a single and unified diagnostic approach (WP8). The means for drawing parents to the early and diagnosis of their children to be through an awareness-raising campaign through the relevant actions of family oriented social events, website information and the production of a short film in the Czech Republic to be broadcast in several countries (WP9).

Expected outcomes period

Work package 1: Coordination of the project; Work package 2: Dissemination of the results; Work package 3: Evaluation of the project; Work package 4: Development of a European Network; Work package 5: Improvement of personnel expertise; Work package 6: : European population based surveillance system for ASD; Work package 7: Characteristics of ASD in Europe; Work package 8: Harmonised early detection tool; Work package 9: Increased public awareness

Details
Start date: 01/01/2006
End date: 01/07/2008
Duration: 30 month(s)
Current status: Finalised
Programme title: First Programme of Community action in the field of public health (2003-2008)
EC Contribution: € 475 755,00