CHICOS Developing a Child Cohort Strategy for Europe

Birth/Mother-Child Cohorts Co-ordination. The focus should address the challenge of assessing and preparing for developing robust health data for birth/mother child cohorts over a substantial time period (+/- 15 years) at the European Union level, and in doing so identify a strategic approach to child health research as well as addressing policy concerns about children life trajectories, such as reducing health inequalities. EU Member States should be covered and relevant European Commission services and EUROSTAT be consulted. Work should take stock and evaluate existing registers and value provided by existing birth/mother child cohorts, taking into account if possible of prenatal and perinatal variables, identify key areas and gaps in knowledge and develop recommendations for research action at the European level in the context of child health.

CHICOS Developing a Child Cohort Strategy for Europe Coordination Action : 1 Jan 2010 – 31 Dec 2012 AIM: To develop an integrated strategy for mother-child cohort research in Europe through coordination of the most important European mother-child cohorts. Coordinator: CREAL 7 other partners: SDU, UoC, UNITO, ERASMUS MC, NIPH, UNIVBRIS, NSPH EC Project Officer: Kevin McArthy

Close coordination of existing studies should be the basis for further research Virtual European mega–cohort : efficient routes of communication and co- ordination that allow quick and detailed identification and promotion of areas of common research

Faroe Islands Generation XXI INMA EDEN EFESE/ELFE PARIS PÉLAGIE ALSPAC BiB ABCD Generation R KOALA PIAMA HUMIS MoBa BAMSE LUKAS KAUNAS REPRO_PL PCB cohort APREG-Gyor RHEA CONER GESPII NINFEA DUISBURG GINI-B LISA MAS SNiP FLEHS DNBC INUENDO ENRIECO cohorts (environmental exposures)

36 Birth Cohorts (enrieco) Start yearsCurrent age of childrenN cohorts Pre-1990>20 years < 5 years6 Size (subjects enrolled)N cohorts 100,0002… 5-15, , ,0008 <1,0008

Concept Currently little coordination Research messages not always filtering through to policy Future research strategy needs to consider European coordination -How can coordination be improved? Future research strategy needs to consider needs of public health policy and decision makers -how can new knowledge from cohort studies contribute to the best public health measures?

Difficulties in translating cohort research to (European) policy : -Speedy answers vs long-term studies -Policy focus on intervention evaluations (what works), health indicators -Translation of research messages into policy relevant information -Coordination at European level lacking -Need to draw attention of policy makers to strengths of cohort research.

Some European action plans/strategies in area of child health WHO-Europe – European strategy for child and adolescent health and development 7 priority areas for action: -Health for mothers and newborns -Diet and nutrition -Communicable diseases -Injuries and violence -Physical environment -Specific health needs of children and adolescents -Psychosocial development and mental health -Toolkit for policy national makers

Some European action plans/strategies in area of child health CEHAPEs – Child and Environment Action Plan for Europe (WHO Europe) 4 priority goals Safe water and adequate sanitation Injury prevention and supportive environments Reduced disease from air pollution Reduced risks from chemical and physical agents

Potential (policy) impact of improved cohort coordination: 1) Understanding inequalities in disease and health related behaviour - across regions, across social/cultural groups, between policies - comparisons of disease prevalence - comparisons of risk factors prevalence - e.g. obesity prevalence: differences Southern vs Northern Europe – potential for intervention policies - Role of cohorts vs other data sources? - Adequacy of current data? - Need for data harmonisation?

Potential (policy) impact of improved cohort coordination: 2) Improving causal inference through: Replication, comparisons - robust replication (genetic and non-genetic) improved causal inference improved policy relevance - different cultures, lifestyles, confounding structures in different countries (challenges and opportunities) - adequacy of existing data? Improved sample size - pooling - rare outcomes, rare risk factors, interactions - genetics, Mendelian randomization, family studies - adequacy of existing data? - difficulties in data pooling…

Potential (policy) impact of improved coordination: 3) Speedy response to key policy questions - response to health scares (MMR and autism) - links between policy makers and cohorts 4) Greater and more efficient use of cohorts - Shared expertise, shared methodology - Use of data not otherwise used Harmonisation/standardisation Diversity

POLICY COHORTS Determinants - Prevalence - Inequalities Policy formulation and action Evidence for causal relationships Outcomes - Prevalence - Disease history - Inequalities - Health care use Expert panels Health risk and impact assessments …

POLICY COHORTS Determinants - Prevalence - Inequalities Policy formulation and action Evidence for causal relationships Outcomes - Prevalence - Disease history - Inequalities Expert panels Health risk and impact assessments … WP1 WP2 WP3 WP4 Dissemination: WP5

CHICOS Objectives : 1.Cohort inventory 2.Research gaps and recommendations 3.Policy contribution 4.Dissemination Strategy for Cohort Research in Europe for next 15 years

WP1 – Description of cohorts and registries Objectives: to make an overview of European mother-child cohorts and registries with data on child health, including a searchable web-based cohort inventory. Discussion points: -Inclusion criteria -Child cohorts? -Existing inventories -European registries and other databases -Data to be included -In web database -Needs of WGs

WP2 – Research Priorities Childhood Diseases Objectives: To evaluate existing information on child health outcomes from mother-child cohorts, to evaluate links to routine registries, to identify gaps in knowledge, and to make recommendations for research action at European level for the next 15 years. The focus will be on key areas of policy concern.

WP2 – Research Priorities Childhood Diseases Focus on prevalence and disease history Identify key areas of policy concern –E.g. obesity prevention, ADHD prevalence data, … Evaluate existing data in European cohorts –based on WP1 inventory, literature, direct contacts with cohorts? –Identify gaps in knowledge, tools/methods, geographical coverage (Eastern Europe!) Contribution of cohorts versus registries and other databases Use of case studies, e.g. comparing ADHD prevalence in the cohorts? Use of data from cohorts? NB: existing European initiatives

WP3 – Research Priorities Child Health Determinants Objectives: to evaluate existing information on major child health determinants and on determinant-outcome relationships from mother-child cohorts, to evaluate links to routine registries, to identify gaps in knowledge, and to develop recommendations for research action at European level for the next 15 years.

WP3 – Research Priorities Child Health Determinants Focus on prevalence of risk factors and causal evidence Identify key areas of policy relevance –i.e. social inequalities Evaluate existing data –Identify gaps in knowledge, tools/methods, geographical coverage –based on WP1 inventory, literature, direct contacts with cohorts? Review strength of causal evidence from European cohort research (case studies?) Contribution of cohorts versus registries and other databases

WP2 & 3 Recommendations for research should include: –contribution of cohorts (vs other data sources and registries) –need for harmonisation of methods and tools –need for European comparisons and pooling –need for targeted research in specific regions (Eastern Europe) –criteria for conducting future follow-ups and new cohort studies –improved coordination

WP2 and 3 Discussion points -Focus -Methods -Cohort involvement (Workshops, invitation to join WGs? questionnaires?) -WG experts & meetings -Registries and other data sources -Links to existing European Projects -Case studies?

WP4 – Improving the contribution of cohorts to European child health policy To develop recommendations to improve the contribution of mother-child cohort research to policy at the European level. Review of current contribution of cohorts to policy –European policy: Systematic review –National policy: 3 case studies Inventory of information needs of policy makers –Delphi studies Evaluation of role of policy makers in cohort study design –Case study of 3 cohorts Recommendations for improved policy impact of cohorts

WP5 – Dissemination Dissemination strategy –Identification of target audiences and stakeholders Dissemination tools Workshop organisation Dissemination activities –Stakeholders forum WP6 – Management Day-to-day management Reporting Support

Existing, related coordination projects EUCCONET: - The European Child Cohort Network – ESF focus on large scale generalist cohorts - focus on methodological aspects of data collection RICHE: - A Platform for Child Health Research in Europe - inventory of ongoing research - indicators - research gaps, roadmaps for future - sustainable platform ENRIECO: – Environmental Health Risks in European Birth Cohorts - inventory, reviews, case studies, recommendations Ga2len, Escape, Hiwate, NewGeneris, Earnest,….

What we want from this meeting… -What do policy makers need / now are research results used (national and international) -Discussion of protocols and workplans of all WPs