The Italian PHGEN National Task Force

Transcript

1 The Italian PHGEN National Task Force Stefania Boccia and Walter Ricciardi Instituteof Hygieneand Preventive Medicine Università Cattolica del Sacro Cuore, Rome, Italy

2 THE ITALIAN PUBLIC HEALTH GENOMICS TASK FORCE Human Genetics Silvio De Flora Walter Ricciardi Paolo Villari Stefania Boccia Public Health Domenico Coviello Elisa Calzolari Franca Dagna Alberto Izzotti Giovanni Neri Emma De Feo Anna Baroncini Pierpaolo Mastroiacovo Laura Murianni Other fields

3 The kick-off meeting on July 2006-I A press communicate was released on Il Sole 24 Ore Sanità (popular newspaper focused on Health)

4 The kick-off meeting on July 2006-II La Task Force Italiana di Genomica in Sanità Pubblica (ITF-PHGEN) Coordinatori.: Stefania Boccia e Walter Ricciardi Istituto di Igiene, Università Cattolica Sacro Cuore, Roma To divulgate the initiative we builded- up a poster used at the National Conferences of the Italian Societies of Hygiene and Preventive Medicine and Human Genetics in 2006 La Genomica in Sanità Pubblica è il trasferimento responsabile ed effettivo delle conoscenze e tecnologie basate sul genoma nelle politiche e nei servizi di Sanità Pubblica per il beneficio della salute delle popolazioni - Bellagio Statement 2005 Il Network Europeo di PHGEN (EU Project: ) Community action in the field of Public Health ( ), Work plan 2005; January 1 st 2006 December 31 st Scopi del Network Europeo: -Assessment (2006): identificazione degli esperti chiave e delle istituzioni rilevanti per la genomica in Sanità Pubblica nei Paesi partecipanti -Policy Development (2007): identificazione dei problemi e delle priorità della genomica in Sanità Pubblica in Europa; contribuire alla creazione di linee guida per i test genetici -Assurance (2008): raccolta delle evidenze sul Rischio Attribuibile di Popolazione per le più importanti malattie complesse associate a varianti genetiche note, ipotizzando l impatto di potenziali programmi di prevenzione Partecipanti: 88 esperti provenienti da 34 diversi Paesi Europei ed Extracomunitari tra cui unici rappresentanti italiani per la Sanità Pubblica il Prof W. Ricciardi e La Dr.ssa S. Boccia Coordinatori: - Public Health Genetics Unit- Cambridge (Prof. R. Zimmern) - German Center for Public Health Genomics- Bielefeld (Prof.A. Brand) - Institute of Public Health- Bielefeld (Prof. H. Brand) Networks Istituzioni La ITF-PHGEN Framework italiano: - Necessità di integrare a livello nazionale la Genomica in politiche e pratiche di Sanità Pubblica - Creazione di infrastrutture e gruppi di lavoro finanziabili dalla autorità competenti A tal scopo - Il 10 luglio 2006 è stata creata la prima ITF-PGHEN composta da esperti di Sanità Pubblica, Genetica Umana, Health Technology Assessment (HTA), Scienze Mediche di base, Scienze Politiche e Sociali (dettagli nel riquadro in basso a destra) I cui primi obiettivi: - Implementare attività formative all interno delle Società Scientifiche di Igiene (SItI) e Genetica Umana (SIGU) - Sviluppare un modello di valutazione evidence- based sulla appropriatezza della erogazione dei test genetici, nell ottica di un loro peso sempre più importante sulla spesa sanitaria nazionale CASE NuGO PHGEN è un network di networks e istituzioni EPIC EUnet HTA P 3 G Euro Gentest orphanet GRAPH Int PHGEN PHGU OGDP at CDC SAFH at IPTS WHO AETMIS IARC UNESCO OECD Da: July, 10th 2006 NTF Italy has met in Rome for the first time: FIRST MEETING of the ITALIAN PHGEN NATIONAL TASK FORCE (NTF) Participants: 1. Prof. W. Ricciardi (Head of the Institute of Hygiene, Catholic University of Sacred Heart-UCSC, Rome) 2. Dr. Stefania Boccia (Institute of Hygiene, UCSC, Rome) 3. Prof. Paolo Villari (Hygiene Section- Department of Experimental Medicine and Pathology, University La Sapienza, Rome) 4. Prof. Alberto Izzotti (Hygiene Section, University of Genoa) 5. Prof. Elisa Calzolari (Head of the Genetics Institute, University of Ferrara) 6. Prof. Giovanni Neri (Head of the Human Genetics Institute, UCSC, Rome 7. Dr. Franca Dagna Bricarelli (President of Italian Society of Human Genetics and Head of Laboratory of Medical Genetics, Hospital Galliera, Genoa) 8. Dr. Domenico Coviello (Head of Laboratory of Medical Genetics, Hospital Maggiore Policlinico, Mangiagalli e Regina Elena- IRCCS, Milan) 9. Dr. Anna Baroncini (Head of Medical Genetics Service, AUSL Imola) 10. Dr. Laura Murianni (Institute of Hygiene, UCSC, Rome) 11. Dr. Francesco Gianfagna (Institute of Hygiene, UCSC, Rome) Guests: Prof. Angela Brand (Public Health Genomics European Network, Bielefeld) Dr. Helmut Brand (Public Health Genomics European Network, Bielefeld) Ulteriori informazioni: Dr. Stefania Boccia Istituto di Igiene (Dir.: Prof. W. Ricciardi), Università Cattolica Sacro Cuore, Roma. Tel.: ; Fax: ; sboccia@rm.unicatt.it

5 For further readings

6 Italian PHGEN-TF current activities At national level Commission for Genetics inside the NHS Application for funds to the Minister of University and Research At internationallevel Application for a Marie Curie researcher training network

7 The Comission for Genetics In July 2007 the Minister of Health called for the creation of a Commission for Genetics inside the NHS (1-year)- 4 components of the IT are inside Aim Provide a list of genomic tests to be provided inside the LEA To set up rules on the publicity and promotion of genetic tests

8 Genetic testing in Italy Dallapiccola et al, 2006

9 Applications for funds Minister of University and Research: Programme of National Interest Project concerning the evaluation of the genetic screening (MTHFR, FV Leiden, F II) for the susceptibility to venous thrombosis in high-risk individuals (Health Technology Assessment approach)

10 The HTA framework for genetic tests

11 Public Health Genomics European Training (PHGET) Project inside the Marie Curie action, aim: to improve the career prespective of researchers who are in their first 5-years of their research career in both public and private sector by a training through research programme in Public Health Genomics Destinatary: young or experienced reserchers devoted to trans-national mobility Lenght: max 4-years training

12 PHGET-List of partecipants I Project coordinator Network participants Legal Entity Department Short Name Università Cattolica del Sacro Cuore Università Cattolica del Sacro Cuore University of Leuven Erasmus MC, University Medical Center Rotterdam University of Applied Sciences Bielefeld Advanced Medicial Technologies Ltd. University La Sapienza French National Authority for Health Institute of Hygiene and Preventive Medicine Institute of Hygiene and Preventive Medicine Center for Human Genetics Project leader EuroGentest Department of Public Health German Center for Public Health Genomics Speaker PHGEN Center for Public Health Genomics and Personalized Medicine Department of Experimental Medicine Project leader EUnetHTA (WP 7) UCSC UCSC KU.Leuven Erasmus MC Scientist in charge Walter Ricciardi Walter Ricciardi Jean-Jacques Cassiman Johan Mackenbach Country Italy Italy Belgium The Netherlands DZPHG Angela Brand Germany ITT Serdar Savas Turkey DEM Paolo Villari Italy HAS Sun Lee Robin France

13 List of partecipants-ii Associated partners Institute for Prospective Technology Studies Foundation for Genomics and Population Health Institute of Public Health NRW International Agency for Research on Cancer Netherlands Institute for Health Sciences Joint Research Centre of the European Commission JRC Dolores Ibarreta Public Health Genetics Unit PHG Foundation Hilary Burton UK Health Policy Project leader PHGEN Genetics Epidemiology Cluster Department of Epidemiology WP1 leader PHOEBE Spain loegd Helmut Brand Germany IARC Paolo Boffetta France nihes Cornelia van Duijn The Netherlands Centers for Disease Control and Prevention National Office of Public Health Genomics Project leader of GRaPH-Int NOPHG Muin Khoury USA Université de Montréal HUMGEN International Centre de recherche en droit public Project leader of P 3 G WP5 leader PHOEBE CRDP Bartha M Knoppers Canada