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

ISS - March, 9th 2012

PROJECT’S UNIT

OU 1 Coordination Unit Responsible Filippo Belardelli (EOMM, ISS). OU 2 Interoperability Unit Responsible Elena Bravo (EOMM, ISS). OU 3 Information 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

ISS - March, 9th 2012

HIBP: Founding Partners (Study catalog) Biobank Name of project/study Acronym Collection

Target number of participants

Study design Status

EURAC, Bozen

Study of “microisolates” in South Tyrol MICROS 1300 Prevalenza Complete

Cooperative Health Research in South Tyrol CHRIS 15000 Cohort Starting

C.I.G. Interdepartmental Center L. Galvani – Univ of Bologna

Genetic of Healthy Ageing GEHA 7966 Cohort Complete

CNESPS (Centro Nazionale Epidemiologia Sorveglianza e Promozione della Salute, ISS, Rome )

Progetto Cuore CUORE

FINE 682 Cohort, cross-sectional prevalence Complete

MONICA 1785 Cohort, prevalence On going

MATISS 8512 Cohort, prevalence On going

OEC 1998 9712 Cohort, prevalence On going

OEC 2008 9020 Cohort, prevalence On going

Italian Twin Registry ITR 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 25000 Cohort On going

WHY A NATIONAL NETWORK?

Researchers require large numbers of quality samples and datasets of genomic data combined with medical and personal information

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

ISS - March, 9th 2012

WHY A NATIONAL NETWORK? ( FOR POPULATION BIOBANKS)

• Several Italian collections are part of European and International projects

• p3g has an international catalogue of population biobanks project. Often only basic information 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 population-based 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

ISS - March, 9th 2012

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 platform

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

ISS - March, 9th 2012

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 platform: www.iss.it/hibp

• 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 information

• Disseminate the work- Promote collaboration

ISS - March, 9th 2012

ISS - March, 9th 2012

Create a common platform: www.iss.it/hibp

Founder Partners

Biobanche Study description form

Questionnaire description form

Physical and cognitive measures

DNA description form

IT description form

DNA details table

Biobanca del Centro Nazionale Epidemiologia Sorveglianza e Promozione della Salute (CNESPS)

Progetto CUORE

MONICA-LT (1983-)

FINE-IT (1985-2005)

MATISS (1984-)

OEC 1998 (1998-2002)

OEC-EHES (2008-2012)

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-BANK

Moli-Sani

GENDIABE

IMA FAMILIES

IMMIDIET

ISS - March, 9th 2012

Questionnaires collection

Biobank Name of project/study Acronym

Target number of participants

Study design Status

Italian Network on Genetic Isolates (INGI)

Carlantino Project 1600 Cohort Case-control Ongoing

Genetic Park of Cilento Project No limit of

enrollments Cohort Case-control Ongoing

Genetic Park of Friuli-Venezia Giulia Project 2000 Cohort

Case-control Ongoing

Val Borbera Isolated Population Project VIPP No limit of

enrollments Cohort Case-control Complete

Istituto per lo Studio e la Prevenzione Oncologica (ISPO)

Florence section of European Prospective Investigation into Cancer and Nutrition

EPIC-Florence 13597 Cohort Ongoing

Biomarker Italung Study related to Lung BIP 1500 Clinical trial Ongoing

Cervical cancer Screening and HPV vaccines ITT study

1600 Clinical trial Ongoing

HIBP: Associate more partner Associate Partners (Study catalog)

ISS - March, 9th 2012

Associate Partners

Biobanche Study description form

Questionnaire description form

Physical and cognitive measures

DNA description form

IT description form

DNA details table

Italian Network on Genetic Isolates [INGI]

Carlantino Project

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

ISS - March, 9th 2012

Associate partners: questionnaires collection

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

ISS - March, 9th 2012

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

Disseminate the work – Promote collaboration

Thank you

Mariarosaria Napolitano Filippo Santoro

Franca Moretti Maria Puopolo

Anna Ferrigno Ugo Visconti

Filippo Belardelli

OU.1 and OU.2 HIBP Partners p3G

and collaborators

Speakers and participants