Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"

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Workshop 7 - Brainstorming & Policy Development session: Prevention
"EUROCAT Study on Prevention of Congenital Anomalies"
Dr. Domenica Taruscio, ISS Italy

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Workshop 7 - "EUROCAT Study on Prevention of Congenital Anomalies"

  1. 1. EUROCAT STUDY ON PREVENTION <br /> OF CONGENITAL ANOMALIES<br />Domenica Taruscio<br />Director of the National Centrefor Rare Diseases <br />Istituto Superiore di Sanità Roma, Italy <br />EUROCAT WP7 Coordinator<br />MEMBERSHIP MEETING 2011<br />AMSTERDAM – 13 & 14 MAY<br />
  2. 2. European Surveillance of Congenital Anomalies<br />Supported by the EU Public Health Programme <br />WHO Collaborating Centre for the Epidemiological Surveillance of Congenital Anomalies<br />
  3. 3. EUROCAT website - http://www.eurocat-network.eu/ <br />
  4. 4. What is EUROCAT?<br />A European network of population-based registries for the epidemiologic surveillance of congenital anomalies<br />Central database: > 400,000 cases, <br />- livebirths, stillbirths and terminations of pregnancy <br /><ul><li> Ongoing</li></ul>Start: 1979, surveying nearly 1.5 million births per year<br />> 40 registries<br />In 20 countries<br />
  5. 5. Introduction<br />
  6. 6. EUROCAT Objectives<br />Provide essential epidemiologic information on congenital anomalies in Europe<br />Co-ordinate the establishment of new registries throughout Europe collecting comparable, standardised data<br />Co-ordinate the detection and response to clusters and early warning of teratogenic exposures<br />
  7. 7. Why is EUROCAT important for preconception care?<br />To provide surveillance on congenital anomalies in Europe.<br />Evaluation of effectiveness of primary prevention regarding congenital anomalies<br />Expert group with focus on NTD and folic acid<br />
  8. 8. Joint Action<br />Main Partner:University of Ulster - EUROCAT Central Registry<br />Partners:34 Associated Partner<br /> 10 Collaborating Partners<br />Starting Date*:January 2011<br />Duration (in months)*:36<br />General Objective:To facilitate the reduction of the public health burden of congenital anomalies by epidemiological surveillance through the EUROCAT network of population-based congenital anomaly registers.<br />Workpackages: 9<br />Funding:1.1 million euros from EU, 2.2 million euros contributed<br />
  9. 9. Joint Action EUROCAT <br />Primaryprevention: Work Package 7<br />Horizontal Work Packages<br />Core Work Packages<br />WP LEADER: ISS - CNMR<br />
  10. 10. How does the “Joint Action” funding mode differ from previous projects?<br />Emphasises sustainability over novelty<br />Recognises need for EU funding to sustain an EU system<br />Formally recognises Member State commitment to the EUROCAT, financially and in terms of MS needs<br />Decentralises EUROCAT further<br />Takes us beyond “epidemiologic surveillance” to MS policy impact via Rare Diseases policy e.g. Primary Preventionworkpackage<br />
  11. 11. ASSOCIATED PARTNERS INVOLVED IN WP 7<br /><ul><li>Spain , ECEMC – ASEREMAC
  12. 12. Italy Campania
  13. 13. Italy Tuscany - IFC-CNR
  14. 14. Italy Emilia Romagna – IMER
  15. 15. Italy – ISS (Work Package Leader)
  16. 16. Croatia, Zagreb – KDB
  17. 17. Malta - MCAR DHIR
  18. 18. Poland - PUMS
  19. 19. France, Strasbourg - UDS
  20. 20. NetherllandsRegistry - UMCG
  21. 21. Slovenia - UMCL
  22. 22. Hungary - NCHAI
  23. 23. Universityof Ulster (EUROCAT CentralRegistry) - UU</li></li></ul><li>The goal of primary prevention <br />is to reduce <br />the incidence of congenital anomalies through:<br />- promotion of protective factors <br />- removal/reduction of risk factors <br />
  24. 24. BD PRIMARY PREVENTION EFFORTS INCLUDE<br />EUROCAT JA<br />WP7<br />BD SECONDARY PREVENTION EFFORTS INCLUDE<br />BD TERTIARY PREVENTION EFFORTS INCLUDE<br />
  25. 25. CAUSES OF BIRTH DEFECTS <br />Primarypreventionpossible<br />
  26. 26. WP7: PrimaryPreventionofCongenitalAnomalies<br />WP7 will assess the feasibility and process for considering primary prevention as an important part of national plans/strategies of EU Member States for rare diseases, with support of EUROPLAN (www.europlanproject.eu)<br />The objective is to build a consensus approach on the inclusion of targeted primary prevention actions within national plans/strategies<br />
  27. 27. WP7: PrimaryPreventionofCongenitalAnomalies<br />To achieve this goal, WP7 will develop two major activities: <br />A) To collect and review public health actions relevant to primary prevention of birth defects<br />The actions on prevention of neural tube defects (NTD) by raising folic acid status<br /> will be considered in detail as a modelfor the actual development of a consensus approach.<br />
  28. 28. A) To collect and review public health actions relevant to primary prevention of birth defects at level of: <br />A.1 pre- and peri-conceptional care, namely: <br /> - folic acid supplementation/fortification; <br /> - maternal lifestyles: smoking, alcohol, recreational drugs; <br /> - counselling on, and management of chronic maternal conditions (epilepsy, diabetes, obesity, etc.) <br /> - use of drugs and health-promoting products (including dietetic or herbal products, etc.) in collaboration with WP9; <br /> - genetic counselling in collaboration with WP8;<br />
  29. 29. A) To collect and review public health actions relevant to primary prevention of birth defects at level of: <br />A.2 census of sectorial and intersectorial policies in MS regarding primary prevention with potential relevance to birth defects, namely: <br />- food safety and nutrition, including promotion of healthy dietary habits; <br />- prevention of rubella, toxoplasmosis, etc.; <br />- regulations on potential teratogens (environment, workplace, pharmaceuticals); <br /><ul><li>actions on health determinants (physical activity, smoking, alcohol, recreational drugs). </li></ul>Consideration will be also given to investment in research on BD and socio-economic and ethnic determinants. <br />
  30. 30. B) The actions on prevention of neural tube defects (NTD) by raising folic acid status will be considered in detail as a model for the actual development of a consensus approach. <br />This will be performed by:<br />B.1 updated survey of policies in MS<br />B.2 track prevalence rates of NTD through the registries<br />B.3 approaches to assess knowledge and attitude toward folic acid of women in childbearing age<br />B.4 appraisal of strategies to monitor population folate status.<br />
  31. 31. 6.3.2 Specific objectives of this Work Package<br />6.3.3 List of deliverable(s) linked to this Work Package<br />6.3.4 Milestone reached by this WP<br />
  32. 32. Report on Periconceptional Folic Acid Supplementation for Italy <br />Edited and co-ordinated by Amanda J. Neville <br />Thisdocumentwasprepared and approvedby the ScientificCommitteeof the <br />Italian Network forFolic Acid Promotion for the primarypreventionof birth defects<br />and the <br />ItalianRegistersofCongenitalMalformations<br />Sebastiano Bianca, Fabrizio Bianchi, Anna Maria Castellazzi, Elisa Calzolari, Francesco Giorgino Libero, Alberto Mantovani, Stefania Ruggeri, Gioacchino Scarano, Gianfranco Tarsitani, Domenica Taruscio, Romano Tenconi, Giuseppe Ugolini<br />Pag 92-100 del Report<br />
  33. 33. NCRD HAS BEEN WORKING FOR MANY YEARS IN NATIONAL AND INTERNATIONAL ACTIVITIES FOR BD PREVENTION<br />2002 - Meeting ISS-WHO “Folic acid: fromresearchto public healthpractice” <br />2004 - Rapporto ISTISAN 04/26<br />Folic acid: fromresearchto public healthpractice<br />Editedby D. Taruscio<br />Since 2004 - Establishment and coordination of “Italian Network for Folic Acid Promotion”<br />To promote, coordinate and bring to the attention of the public actions in favour of a greater intake of folic acid in the periconceptional period<br />2009 - ESCO Report on Analysis of Risks and Benefits of Fortification of Food with Folic Acid <br /> Question No EFSA-Q-2008-383; Issued on 6th October 2009<br />2009 - EFSA meeting summary report<br /> FOLIC ACID: AN UPDATE ON SCIENTIFIC DEVELOPMENTS<br /> Question No EFSA-Q-2009-00415<br /> ISSN 1725-9843; 21-22 January 2009, Uppsala, Sweden<br />2010- “Public consultation on the EFSA draft guidance on human health<br />risk-benefitassessmentoffoods”(EFSA Journal 2010; 8(7):1674 http://www.efsa.europa.eu/en/scdocs/scdoc/1674.htm)<br />
  34. 34. … RECOMMENDS THAT MEMBER STATES:<br />Elaborate and adopt a plan or strategyassoonaspossible, preferablyby the end of 2013 at the latest<br />Takeactionto integrate current and future initiatives at local, regional and nationallevelsintotheirplans or strategiesfor a comprehensiveapproach<br />Define a limitednumberofpriorityactionswithintheirplans or strategy,withobjectivs and follow-up mechanisms<br />Take note of the developmentofguidelines and recommendationsof the ongoingeuropean project EUROPLAN<br />
  35. 35. www.europlanproject.eu<br />
  36. 36. Thanksforyourattention<br />domenica.taruscio@iss.it<br />

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