Project funded in 2005 - Strand 1: Health Information

EAIS - European Autism Information System

Description

Action
Health information

Area of activity
Developing strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats, including gender specific health threats and rare diseases

Summary
Autistic Spectrum Disorders seem to be on the increase as evidenced by several authors. However, there is no European wide information on the prevalence. Difficulties such as lack of consistency in diagnosis, lack of agreement on case definition and differences in case finding methods have contributed to this. Equally, in Europe, the social and economic burden of ASD has not been adequately recorded, as epidemiological figures are unreliable and inconsistent.

Early and intensive education can help children with ASD to develop and learn new skills. Prognosis is greatly improved if a child is placed into an intensive and highly structured educational program by age two or three. Earlier identification of children with ASD could increase the effectiveness of their treatment.

This project proposes to address these two areas of deficiency in the European picture, namely lack of systematic, consistent and reliable data on ASD and the lack of agreed and harmonised early detection tools.
This proposed Action will deal with both issues in a coordinated way. By adopting an articulated strategy that includes networking among major European stakeholders the scientific community will be mobilised to agree upon appropriate tools to monitor, combat and prevent the disease. Anticipated stakeholders are technical institutions, decision makers (including politicians) and the general public. Core outputs of this mobilisation will be the development of a dedicated information system and evidence based agreement about appropriate diagnostic criteria.

The project will create a network, the European Autism Alliance (EAA), as a forum to advance the communication and coordination of professional expertise in the EU on ASD. Seminars and Conferences are proposed as methods of reaching Europe-wide agreement on case definition and dissemination of key outputs from the project. A register of concerned professionals will be created to allow greater through flow of communication and opinion.

Once an evidence based early detection tool has been proposed, e-training platforms will be ready for concerned professionals across Europe to access the information and upskill themselves in its use.

A central aim of the project is to have an agreed information system to record ASD data. This data, rcorded in common format across the EU, will provide the strongest, most robust evidence available to determine both the prevalence and financial burden of the disease and to monitor ongoing trends in these areas. After the completion of this project this system could be further developed as a full scale EU surveillance system.

The action will take place across Europe and will include EFTA EEA states. A collaboration of institutes from Ireland, Italy, Denmark, Spain, UK and the Czech Republic will take lead roles in specific areas of the project and collaboration has been agreed with institutes in Scotland, Malta, Romania, Turkey, Italy, Poland and the US (CDC Atlanta).

More info...

Financing

Leader organisation
The Hope Project
St. Josephs,
Ballinabearna,
Ballinhassig, Cork,
Co. Cork.
Contact Person
Dr. Alvaro RAMIREZ
Chiren Therapy Centre
Ogonnelloe
Scarriff
Co. Clare
Ireland
Tel. +353 61 923944
Fax. +353 61 923157
E-mail: aramirez@hopeproject.ie
Web site: http://www.eais.eu

Associated beneficiaries
  • Aarhus Universitet - established in Denmark
  • University College Cork - established in Ireland
  • Azienda ULSS 20 Di Verona - established in Italy
  • Fundación para la Cooperación y Salud Internacional Carlos III - established in Spain
  • AUTISTIK - established in the Czech Republic
  • King’s College London – established in the United Kingdom

Starting date and duration of project
- 01/01/2006
- 30 months

Total cost
792.925 €

Subsidy from the Commission
475.755 €

Outcomes

Results to be achieved
Work package 1: Coordination of the project
This Work Package is linked to both specific objectives of this project and aims to ensure their smooth and timely achievement by coordinating the skills and resources of all project partners.

Work package 2: Dissemination of the results
This Work Package is linked to both specific objectives of this project. An important precondition in ensuring an effective dissemination process is to assess the quality of the information to be disseminated.

Work package 3: Evaluation of the project
This Work Package is linked to both specific objectives of this project in that evaluation should be carried out throughout the lifetime of the project (mid-term, final and ex-post) in order to ensure not only the transparency and accountability of the project but also the relevance, effectiveness and impact of the project.

Work package 4: Development of a European Network
This work package is linked to the first specific objective; develop mechanisms for obtaining systematic, reliable and consistent data in Europe. With this strategic work package we would organise a European network (EAA) creating a sustainable association and facilitating the communication between members of EU and implementation of the other work packages supported by the relevant persons and institutions with interest in ASD across Europe including EFTA-EEA countries.The Scientific Advisory Panel is another important activity in order provide high scientific standards in our results.

Work package 5: Improvement of personnel expertise
This work package is linked to the first specific objective; develop mechanisms for obtaining systematic, reliable and consistent data in Europe. Clinical information, guidelines and results from all work packages will be included in the education/training platform that will be available in all the official languages of the EU including EFTA-EEA countries.

Work package 6: : European population based surveillance system for ASD
This work package is linked to the first specific objective; to develop mechanisms for obtaining systematic, reliable and consistent data in Europe. This work package aims to take the first step in the creation of a European surveillance system that will permit comparison of indicators and time trends in Europe and between Europe and elsewhere.

Work package 7: Characteristics of ASD in Europe
This work package is linked to the first specific objective; to develop mechanisms for obtaining systematic, reliable and consistent data in Europe. This work package is linked to the objective as it aims to provide the starting point of the first European prevalence and financial burden study of ASD. This is a challenge that needs to consider the extreme difficulties in measuring ASD indicators: usual health information sources are difficult or non-existent and the available studies are infrequent and do not allow comparison. There is no central recording of ASD cases at EU level and this work package aims to provide an initial anaysis of the European ASD situation with standard methodology across Europe.

Work package 8: Harmonised early detection tool
This work package is linked to the specific objective to strengthen the early diagnosis of ASD. An appropriate, harmonised, early detection tool is required, along with the education and training package for its use, in order to achieve early diagnosis of ASD, which is crucial for the timely interventions that will improve children's prognosis.

Work package 9: Increased public awareness
Raising public awareness is a cornerstone of the specific objective "Strengthening early Diagnosis". An early diagnosis of autism is preceded by an early identification of the condition. In this context, awareness raising activities are targeted not only at medical professionals but also at the general public and in particular at schools or other education environments so that there can be increased awareness not only of autism itself but also of the tools that enable an early identification of the condition, leading ultimately to an early diagnosis.

- Second interim reportpdf(2 MB)


- First interim reportpdf(87 KB)
Annex 1pdf(63 KB)pdf
Annex 2pdf(131 KB)pdf
Annex 3pdf(65 KB)pdf

More info

Statement of project aim(s) and objectives
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

Specific objectives
There are two specific objectives of this project:
  1. To develop mechanisms for obtaining systematic, reliable and consistent data for ASD in Europe.
  2. To strengthen the early diagnosis of ASD.

The overall strategy of the project will 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 will 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 will be made and validated in a pilot study. This will provide a starting point for systematic and consistent indicators in the future. A characterisation of the current situation of ASD in Europe will be designed and piloted as part of the project.

The strategy for strengthening early diagnosis will 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
To develop a European network of professionals involved in Autism (WP4), key concerned institutions in Europe will 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 will facilitate dialogue through a website and yearly workshops and will 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 will be developed. This will 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 will derive from the flow of information from WP6, WP7 and WP8.
A review of existing ASD surveillance in Europe will be carried out in WP6. This information will be analysed and gaps will 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 will be conducted to evaluate recommendations and validate data. The system can then be commissioned and those accessing it will be trained on the education and training platform (WP5).
A research study will 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 will be evaluated and evidence-based arguments will 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 will 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).