Challenges and Opportunities of the Italian Hub of Population Biobanks

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1 Challenges and Opportunities of the Italian Hub of Population Biobanks The project for the construction of HIBP Elena Bravo Department of Hematology, Oncology and Molecular Medicine (EOMM) Istituto Superiore di Sanità Pocchiari Aulditorium March, 9th 2012

2 PROJECT S UNIT OU 1 Coordination Unit Responsible Filippo Belardelli (EOMM, ISS). OU 2 Interoperability Unit Responsible Elena Bravo (EOMM, ISS). OU 3 Ination technology Unit Responsible Paolo Roazzi (IT, ISS). OU 4 Population biobanks OU 4 Population biobanks Biobank of the CNESPS (Centro Nazionale Epidemiologia Sorveglianza e Promozione della Salute, ISS) - Responsible Simona Giampaoli Biologic Bank of the EU Genetics of Healthy Ageing (GEHA) - Responsible Claudio Franceschi EURAC Biobank - Responsible Peter Pramstaller Banca Biologica del Progetto Moli- Sani (Moli-Sani) - Responsible Maria Benedetta Donati and Licia Iacoviello

3 HIBP: Founding Partners (Study catalog) Biobank Name of project/study Acronym Collection Target number of participant s Study design Status EURAC, Bozen C.I.G. Interdepartmental Center L. Galvani Univ of Bologna CNESPS (Centro Nazionale Epidemiologia Sorveglianza e Promozione della Salute, ISS, Rome ) Study of microisolates in South Tyrol Cooperative Health Research in South Tyrol MICROS 1300 Prevalenza Complete CHRIS Cohort Starting Genetic of Healthy Ageing GEHA 7966 Cohort Complete Progetto Cuore Italian Twin Registry CUORE ITR FINE 682 Cohort, crosssectional prevalence Complete MONICA 1785 Cohort, prevalence On going MATISS 8512 Cohort, prevalence On going OEC Cohort, prevalence On going OEC Cohort, prevalence On going No limit of enrollments Cohort, prevalence On going Italian Project on the Epidemiology of Alzheimer's Disease IPREA 4785 Cross-sectional and longitudinal follow-up Complete MOLI-BANK, Molise The Moli-Sani Project GENDIABE 900 Cohort Complete IMA FAMILIES 752 Cohort Complete IMMIDIET 2200 Cohort Complete MOLISANI Cohort On going

4 WHY A NATIONAL NETWORK? Researchers require large numbers of quality samples and datasets of genomic data combined with medical and personal ination Samples stored by population biobanks represent a great patrimony for preventive and predictive medicine and public health Technology and genomics development are increasing the potentiality of already existing collections The existing collections suffer from fragmentation, variable access rules and the lack of commonly applied standards and ethical procedures

5 WHY A NATIONAL NETWORK? ( FOR POPULATION BIOBANKS) Several Italian collections are part of European and International projects p 3 g has an international catalogue of population biobanks project. Often only basic ination are available In Italy, population-biobanks collections and work are less known than pathological biobanks and also reciprocal knowledge is poor Public resources are decreased. The medium-long term economical investment required for prospective populationbased studies makes more difficult to implement prospective biobank-based studies Potential of harmonization and e-tools for integration of data have not been fully explored

6 OBJECTIVES OF HIBP To stimulate integration of the population biobanks in the Italian roadmap for scientific infrastructure and encourage synergic activities between public and private and Regions and Ministers The recognition by policy makers of the value of population-based studies in improving public health and reducing health care spending To promote population biobanks reciprocal knowledge and their activity in whole biobanking scientific community and epidemiologists HIBP as a dynamic tool for preventive and predictive medicine in Italy To explore chances and develop /test methodologies to favor collaboration and data integration by harmonization and e-tools To work for future population-based studies to answer to the needs of harmonization standards for sample collection, storage, analysis and database infrastructure and to realize a common ethical and legal plat To disseminate this work to facilitate participation to intra-regional, national, European and international collaborations To align the goals of predictive and preventive medicine with the strategic objectives of the legal consortium of BBMRI

7 ACTIVITIES (TO BUILD UP ON WHAT ALREADY EXISTS) HIBP: Meeting and very frequent contacts. Large discussion on the activities Implement collaboration with p3g (visit, webinar, share descriptive and scientific tools ) Create a common plat: Acquire more questionnaires by each collection, organize and publish the data Associate more partner ( section on website) To set a pilot project: give the «proof of concept» that «share» what exists provide supplementary epidemiological ination Disseminate the work- Promote collaboration

8 Create a common plat:

9 Founder Partners Biobanche Questionnaires collection MONICA-LT (1983-) Study Questionn aire Physical and cognitive measures DNA IT DNA details table Biobanca del Centro Nazionale Epidemiologia Sorveglianza e Promozione della Salute (CNESPS) Progetto CUORE FINE-IT ( ) MATISS (1984-) OEC 1998 ( ) OEC-EHES ( ) Progetti IPREA e DEMENZE Registro Nazionale Gemelli EURAC Study of "microisolates" in South Tyrol (MICROS) Cooperative Health Research In South Tyrol (CHRIS) Banca Biologica del EU Genetics of Healthy Ageing (GEHA) Moli-Sani MOLI-BANK GENDIABE IMA FAMILIES IMMIDIET

10 HIBP: Associate more partner Associate Partners (Study catalog) Biobank Italian Network on Genetic Isolates (INGI) Istituto per lo Studio e la Prevenzione Oncologica (ISPO) Name of project/study Acronym Carlantino Project 1600 Genetic Park of Cilento Project Genetic Park of Friuli- Venezia Giulia Project Val Borbera Isolated Population Project Florence section of European Prospective Investigation into Cancer and Nutrition Biomarker Italung Study related to Lung Cervical cancer Screening and HPV vaccines ITT study VIPP Target number of participants No limit of enrollments 2000 No limit of enrollments Study design Cohort Case-control Cohort Case-control Cohort Case-control Cohort Case-control Status Ongoing Ongoing Ongoing Complete EPIC-Florence Cohort Ongoing BIP 1500 Clinical trial Ongoing 1600 Clinical trial Ongoing

11 Associate partners: questionnaires collection Associate Partners Biobanche Carlantino Project Study Questionn aire Physical and cognitive measures DNA IT DNA details table Italian Network on Genetic Isolates [INGI] Genetic Park of Cilento Project Genetic Park of Friuli-Venezia Giulia Project Val Borbera Isolated Population Project [VIPP] Istituto per lo Studio e la Prevenzione Oncologica [ISPO] Florence section of European Prospective Investigation into Cancer and Nutrition [EPIC-Florence] Biomarker Italung Study related to Lung Cancer [IBIP Italung Biomarkers Project] Cervical cancer Screening and HPV vaccines ITT study

12 A PILOT PROJECT FOR HIBP ( FOUNDER PARTNERS) CCM funding do not support laboratory work for HIBP General Scope : HIBP pilot study aims to test the synergism among collections to address (simple) scientific question of preventive medicine using available data Specific AIM: To evaluate the correlation between lipidemic profile and geographical position of provenance. Steps: To agree about scientific question that could be addressed Define the data that are needed to this aim Verify that the data are already available in the biobank To verify the accomplishment with ethical issues Open discussion and agreement on Data transfer agreement (DTA) Signature of DTA by all responsible of collections or unit Uploading of shared data To further test harmonization Statistical analysis of data Sharing results Diffusion of results

13 Disseminate the work Promote collaboration Challenges and Opportunities of the Italian Hub of Population Biobanks (HIBP) Istituto Superiore di Sanità (ISS) in collaboration with CENTRO NAZIONALE PER LA PREVENZIONE IL CONTROLLO DELLE MALATTIE (CCM) March 9th, 2012 Istituto Superiore di Sanità Thank you OU.1 and OU.2 Filippo Belardelli Mariarosaria Napolitano Filippo Santoro Franca Moretti Maria Puopolo Anna Ferrigno Ugo Visconti HIBP Partners p 3 G and collaborators Speakers and participants

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