NO PUBLIC HEALTH STRATEGY IN ASD IN EUROPE CALL FOR TENDERS. Antoni Monserrat Directorate of Public Health

Transcription

1 NO PUBLIC HEALTH STRATEGY IN ASD IN EUROPE CALL FOR TENDERS Antoni Monserrat Directorate of Public Health

2 1.Prevalence / Health and economic burden 2. Early detection, diagnosis early intervention and biomarkers 3. Adult life with ASD treatments and support 4. Policies for ASD in Europe Public Health 5. Information, coordination and evaluation

3 The ASDEU consortium associated partners are: Programme lead: Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Spain Medical University of Vienna, Austria Autism Europe, Belgium Ghent University, Belgium Bulgarian Association for Promotion of Education and Science, Bulgaria Aarhus University, Denmark University of Oulu, Finland University Toulouse 2 Jean Jaurès UT2J, France The State Diagnostic and Counselling Centre, Iceland The IRCCS Stella Maris Foundation, Italy Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal University of Warsaw, Poland Dublin City University, Republic of Ireland Victor Babes National Institute of Pathology, Romania Fundación Canaria para el Avance de la Biomedicina y la Biotecnología, Canary Islands, Spain Fundación Española para la Cooperación Internacional, Salud y Política Social, Spain Universidad de Salamanca, Spain London School of Economics and Political Science, United Kingdom King s College London, United Kingdom National Autistic Society, United Kingdom Associated partners 20 Collaborting partenrs 2 Member States 14 ASD organizations, AE, NAS 2 Feb, 2015 Feb, 2018 Collaborating Partners: Istituto Superiore di Sanità, Italy Policlínica Gipuzkoa, Spain

4 WP8. Coordination

5 WP1. Prevalence Study field approach More tan 20 areas in 8 countries (Goal: 170,000 children, age: 7 9 y.o.) Timing: Full school year Screening using the Teacher Nomination form (Hepburn, 2008) in regular schools plus SCQ ADOS-G & ADI-R Population approach Manuel Posada 5 áreas in 4 countries (goal: More than 480,000 livebirths 7-9 y.o.) 4 Population-based registries plus 1 population sureveillance system

6 WP1. Health Burden and Economic Burden DALY (Disability adjusted life years) - Prevalence / Mortality rate across ages (WHO 2014) Economic Burden Pedro Serrano 12 Member States - Prevalence - Place of residence - Level of functioning - Other individual characteristics associated with differences in economic impacts Martin Knapp - Estimation of the associated service use patterns - Calculation of cost per individual. Economic Impact of Screening Programs - Salamanca & Zamora (Spain) children screened

7 WP2. Early detection, diagnosis and intervention Review of best practices & evidence based interventions Training modules (languages, printed & electronic) Multiprofesional Focus Groups + Stakeholders Expert Groups Meta-analysis of M-CHAT vs. other international screening instruments EuroQoL-5D, CareerQoL. 12 Member States Ricardo Canal

8 WP2. Early detection, diagnosis and intervention (Search for new reliable indicators of ASD risk) - Non socio-communicative aspects Behavioral parameters Risk factors Crying, feeding and sleeping Biomarkers Herbert Roeyers Literature review, On-line survey, Expert Groups Strategy to study validity of these non-social aspects

9 WP3. Adults treatment and support Diana Schendel - Identify best multimodal/multidepartmental practices - Co-morbidity; access to Dx. & post-dx. support - Life transitions and care for elder citizens with ASD - scientific and local literature search - on-line surveys - Use External referent of care as benchmark for services and care delivery as reported in the surveys

10 WP4. ASD Policies in the European Union Aurelie Baranger Aims: To assess health, education and existing social policies in EU Member States to support people with Autism Spectrum Disorders at all ages and their families. To develop a public health plan addressing ASD.

11 WP7. Collaboration with EU-AIMS (European Autism Interventions a multicentre study for developing new medications) CLINICAL TRIAL NETWORK 78 Units 37 Countries 30M Tony Charman

12 WP5. Dissemination Carol Povey WP6. Evaluation Manuel Posada - Portal (Internal & External), meetings, papers, newsletters, media - Performance control, indicators, reports - Coordination and management (EU Commision contract ) Rumen Stefanow

13 (Kickoff Meeting, CSIC Delegation Offices, Brussels, February 19/20, 2015)