ESBB: A New Biobanking Society Built on a Solid Foundation

Rita Lawlor

Project / Biobank Manager ARC-NET Applied Research on Cancer University of Verona

President-Elect ESBB

Collections done by individuals for personal research

Technology was basic

The Good Old Days

1990: thousand bases/day

2000: million bases/day

2010: billion bases/day

Advent of New Technologies

Advent of Bio Informatics

More data

More Computing Power

Clinical Scientist

Clinical Research Centre

DMS

University

Public domain

LIMS System

Omics Data

Statistics System

Hospital laboratory

Case Report Form (CRF)

Patient Notes

EPR System

Hospital

Pathology

Study DMS

Images

Tissue bank

Bio-informatics

Genome Projects

Categories of Information

Samples and information need to provide reliable and reproducable research

Need to Share

• Correct protocols on collection, processing, storage

• Homogeneous protocols for sample sharing and consistency

• Accurate Annotation

Population Biobanks

Collection & Follow-up over Long periods of Time Long Term Storage Large Numbers of Samples Large Amounts of Data Governance on Access Need to satisfy Different Research Requirements

Disciplines Involved in Bio-banking

epidemiology

security

engineering

Molecular Biology

Law

Laboratory skills

Ethics

Data Analysis

Data Protection Pathology

ICT Accounting

Project Management

Business Management

Need to have forum of collaboration to address new emerging issues not only for established banks but for those getting started

Why do we need a society ?

International Society for Biological & Environmental Repositories

An international society for biobanking

Founded in 1999

500+ members

www.isber.org

• Meetings that bring you the latest updates from leaders in the biobanking field

• The opportunity to meet people involved in a wide

spectrum of biobanking activities, from countries all over the world

• An established international network of people, who provide a source of support and collaboration in between meetings.

Benefits That ISBER Provides

(1) Meetings bring different groups together

(2) Meetings encourage interaction (3) Meetings focus on cross-cutting issues (4) Committees and working groups function all year around

How ISBER Works

(a) Bring together representatives of different biobank types – Disease-based biobanks/ tissue banks – Population biobanks – Culture collections – Environmental biobanks – Museum biobanks

(1) Meetings Bring Different Groups Together

(b) Bring together different nationalities (c) Bring together vendors and customers

1. Lectures

2. Panel Discussions

3. Workshops

4. Posters

5. ‘Lightning Round’ Poster Discussion Session

6. Exhibits

7. Working breakfasts

8. Roundtable Lunches

9. Social Events

(2) Meetings Encourage Interaction

Human Repositories

Plant & Animal Repositories

Microbial Repositories

Database design Biospecimen research

Sample processing & transport Automation

Human subjects regulations CITES

regulations

CDC regulations

Population Biobanks

(3) Meetings Focus on Cross-Cutting Issues

(4) Committees & Working Groups Function All Year Around

Examples of Working Groups: • Rights to & Control of Human Tissue Samples • Informed Consent Procedures for the Collection of Biospecimens • Automated Repositories • Biorepository Funding & Promotion • Biospecimen Science

• Allow regular meetings to be held in the region – Travel are more affordable. – Meeting topics are more relevant to the region.

• Regional networking is improved by the chapter marketing team.

• Retains the advantages of being part of an international organisation.

Regional Chapters of ISBER

A Chapter of ISBER

• May 2010 – Discussion session on having a European chapter of ISBER at the ISBER meeting in Rotterdam

• June 2010 – Started discussion group on LinkedIn.

Over 500 participants joined in first 2 months

• August 2010 – Meeting of 35 interested people in Milan. Decision taken to form ESBB

• April 2011 – ESBB was granted ISBER chapter status

• November 2011 – ESBB’s first annual conference

ESBB Timeline

ESBB Executive Committee

Peter Riegman (NL) - President Rita Lawlor (IT) – President-Elect Pasquale De Blasio (IT) – Past-President Tobias Schulte-in-den-Baumen (NL) - Treasurer Christian Chabannon (FR) - Councillor Marta Acilu (ES) – Councillor Hans-Peter Deigner (DE) - Councillor Peter Doran (IE) - Councillor Elena Salvaterra (IT) - Councillor Philippe Van der Hofstadt (BE) - Councillor

Robert Hewitt (FR) - Executive Officer Ann Cooreman (GB) - Member Marc Reymond (DE) - Member Christian Oste (SP) - Chair, Vendor Committee Vincenzo Costigliola (BE) – EPMA representative Olga Golubnitscha (DE) – EPMA representative Marianne Henderson (USA) – ISBER representative Mark Sobel (USA) – ISBER representative

Voting members

Non-voting members

Elections in 2012: • President-elect • 2 Councillors

• ESBB’s mission is to advance the field of biobanking in support of research relating to healthcare, agriculture and the environment

• ESBB caters to all kinds of biobank

• ESBB focuses on shared areas of interest

ESBB Mission

Different Regulations Different Legal Systems Different Medical Systems Different Information Systems Different Transport Issues Different Data Protection Issues Different Patient Privacy Issues Different Cultures Different Languages

ESBB Particpant Issues

1. Patients

2. Researchers

3. Bio-bankers

4. Pharma

5. Vendors

ESBB Groups

Website: www.esbb.org

• Individual Members: 61

• Biobank & Institutional Members: 36 with 96 delegates

• Corporate Members: 45 with140 delegates

ESBB Membership, 25th February 2012

Website: www.esbb.org

• Date: 16th – 19th November, 2011

• Venue: Marseille Pullman Palm Beach

• Theme: “Identifying the challenges and the opportunities for biorepositories today and in the next 5 years”

FIRST ESBB Annual Meeting

• Topics: Integrating research biobanking with the provision of

healthcare services and clinical trials; Biobanking economics, ELSI with the advent of personalised medicine; Museum Biobanks, Veterinary Biobanks and Environmental Specimen Banks; Biobanking in Africa & the Middle East.

• 42 invited speakers, including: o Christian Bréchot – BioMérieux o Hagen von Briesen - Fraunhofer o Kurt Zatloukal – University of Graz

Website: www.esbb.org

Working Groups at the ESBB Conference

Examples of Working Groups: • Rights to & Control of Human Tissue Samples • Informed Consent Procedures for the Collection of Biospecimens • Automated Repositories • Biorepository Funding & Promotion • Biospecimen Science • Other Working Groups?

Website: www.esbb.org

378 Participants 33 Countries 3 Continents

Second ESBB Annual Meeting: 7th – 10th November 2012

Organiser

Co-Organiser

Collaborators

Granada Conference & Exhibition Centre

Exhibition Hall (80 booths)

Main Auditorium (547 seats)

Break-out Room

Exterior

Granada

www.esbb.org/granada

Travel Fellowships to Attend Granada Conference

• Each travel fellowship will provide 2,000 Euros to support travel, accomodation and registration. • Countries eligible:

Albania, Algeria, Armenia, Azerbaijan, Benin, Boznia & Herzegovina, Burkina Faso, Burundi, Cameroon, Cape Verde, Central African Republic, Chad, Comoros, Congo, Côte d'Ivoire, Democratic Republic of Congo, Djibouti, Equatorial Guinea, Eritrea, Ethiopia, Gambia, Georgia, Ghana, Guinea, Guinea-Bissau, Iraq, Jordan, Kenya, Kosovo, Lesotho, Liberia, Madagascar, Malawi, Mali, Mauritania, Morocco, Mozambique, Namibia, Niger, Nigeria, Rwanda, Sao Tome & Principe, Senegal, Sierra Leone, Somalia, South Sudan, Sudan, Swaziland, Syrian Arab Republic, The Former Yugoslav Republic of Macedonia, Togo, Tunisia, Uganda, Ukraine, United Republic of Tanzania, West Bank & Gaza Strip, Yemen, Zambia, Zimbabwe (Countries in WHO HINARI groups A & B in the EMEA region)