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Evaluation BBMRI - (preliminary) results BBMRI Stakeholder’s Forum: Patient Working Group Paris 15 December 2009

Introduction
Project for WP1/WP7...
to carry out an ex-ante impact assessment of BBMRI
to set up a coherent monitoring and evaluation strategy for BBMRI
Approach of the study
Ad 1: Literature review
Ad 1: 10 Case studies - combined
Ad1: Mapping and clustering of biobanks - SNA
Preliminary conclusions
Ad 2: Logical Framework analysis
Ad 2: Indicator development
Validation by stakeholders
Timeline: January - December 2009

Case studies - selection
Estonia BioBank - population based
DeCode - population based
Biobank Castilla-L é on - case/control oncology
TransBig - case/control oncology (Mammaprint)
Telethon - case/control rare disease network
EuroBioBank - case/control rare disease network
UDBN - case/control network
ENGAGE - data network
Graz Biobank - population based
Huddinge Brain bank - case/control neurology

Case studies results combined (1) - Time/maturity
Majority started 5-7 years ago
Majority is nationally organised
< 2000 >2000<2005 >2005 3 (DeCode, Graz, Huddinge) 4 (EGF, UDBN, EBB, TBCyL) 3 (Telethon, Engage, TransBig) Regional National European/Inter-national 1 (TBCyL) 5 ( DeCode, EGF, UDBN, Graz, Huddinge) 3 (EBB, Engage, TransBig)

Case studies results combined (2) - Numbers
Collection - big spread: 1,100 - 4,400,000
Distribution - mainly unclear, only when central access is available
Collection < 10,000 10,000-100,000 >100,000 3 (Huddinge, TransBig, TBCyL) 3 (UDBN, EGF, Telethon) 4 (Graz, EBB, Engage, DeCode Distribution ? 0-1000 >1000 5 (DeCode, EGF, Graz, Engage, Huddinge) 2 (TransBig, TBCyL) 3 (UDBN, Telethon, EBB)

Case studies results combined (3) - Organisation
Centralised repositories vs distributed
Research - networks - infrastructure
Central Distributed Mixed 6 (DeCode, EGF, Huddinge, Graz, Transbig, TBCyL) 3 (Telethon, EBB, Engage) 1 (UDBN) Research Soft - networks Infrastructure 3 (TransBig, TBCyL, Huddinge) 3 (Telethon, EBB, Engage) 4 (EGF, DeCode, Graz, UDBN)

Case studies results combined (4) - Outreach activities
Majority not very active towards industry
To society it is slightly better

Case studies results combined (5) - Funding patterns
Mixed funding models
- personnel/infrastructure: public (institution)
- research: public (grants)
Biobanking long-term investment in infrastructure
The start-up phase most expensive
Personnel highest costs, both at the start and in maintenance
Hidden costs that are not made explicit
Networking reduces costs (Telethon) - saved 2/3
Funding from industry doesn't work at the start (objectives diverge), but neither in the long run
Not until public funding is received the biobank activities are getting sustainable (Graz, Estonia)
Difficult to find core (sustainable) funding
Difficult to find public funding since it is time-limited

Social Network analysis – Why and how
Interconnectedness crucial element in the development of European biobanking
How can we identify the nature and evolution of links?: “Social Network Analysis” techniques : Inter-organisational links
Source: projects identified as biobanking related projects by the "Networking meeting for EU-Funded Biobanking Projects" Report (2008) and the Wellcome Trust report "From Biobanks to biomarkers" (2006); Data collected from CORDIS
Red square is an institution that is not BBMRI
Green triangle is BBMRI member
Round green is BBMRI associate
Size of node is proportional to number of projects an institution has participated in
The thickness of the line is proportional to the number of projects they have co-participated
FP6: only institutions that are participating in more than one project

Social Network analysis - result FP5

Social Network analysis - result FP6

Social Network analysis - organisations

Overall (preliminary) conclusions (1)
Time/maturity
Before 2000, biobanking wasn’t really recognized as a concept
The time it takes before a biobank becomes fully operational is decreasing (speed increases)
Networking
There is a tendency towards bigger, international networks, and therefore bigger collections/number of samples
From the SNA, you can see that the core BBMRI members already had a central position in FP5
In FP6 you can see a boost in biobanking activities by the number of projects and number of institutions involved: periphery is growing
From FP6 SNA, you can see that there are still a considerable number of institutions involved in biobanking that need to be included in BBMRI

Organisation
All biobanks display elements of research, networking and infrastructure;
Research is an ‘early’ activity,
Networking and infrastructure need time to establish
Networks, as a ‘soft’ infrastructure, are designed to connect distributed repositories
4 of the central repositories have evolved into mature, ‘hard’ infrastructures
Distribution is related to the issue of access
The fact that half the cases don’t know how many samples are transferred, can be taken as a sign of internal orientation - are they really opening up?
When we find carefully managed distribution strategies, we can link it to funding cultures

Funding
You need at least one funding period to build a biobank
In the transition from research to infrastructure, the funders should address the issue of funding maintenance of infrastructure
Funding mechanisms in Europe are not suitable for maintenance of biobanks
Outreach
In general, the external activities are not overwhelming; biobanks are usually more geared towards research or operational affairs, rather than towards socio-economic engagement
Having said that, outreach activities are particularly noticeable in some types of biobanks
Population based biobanks > society
Case control biobanks > industry
Rare disease oriented biobanks > society
Immature or young biobanks > little external activities as yet

Indicator development
Short term outputs - internal and operational side of biobanks/BBMRI
Quality management procedures, IT infrastructures, ELSI procedures, User access agreements, Search engines, Common tools and services
Adoption of ERI concept
Middle term outcomes - establishment of hard infrastructure/networks,
Increased availability of samples; increased research collaboration; increased use of biobanks and the payment of fees related to this use;
ERI contracts
Start of outreach activities to comply with external strategy

Indicator development
Long term impacts - sustainable funding/adequate business model
Medical applications in diagnostics, biomarkers, drugs, and the economic and health benefits of these applications, including new therapies, new diagnostics, personalized medicine:
Outreach activities to the appropriate professionals, patients and policy makers
Long term collaborations with industry; New Life Sciences companies providing biobank related services
Contextual impacts - not so easy to make them explicit: you only miss them when you don’t do it
Sustainable savings in the execution of biomedical research - funders
Increased speed in building networks - USA
A clear governance structure without which it isn’t possible to comply with future regulatory and technological frameworks

Thank you
Pauline Mattsson
Ingeborg Meijer
Jordi Molas Gallart
Anke Nooyen
Technopolis Group has offices in Amsterdam, Ankara, Brighton, Brussels, Paris, Stockholm, Tallinn and Vienna.

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by BBMRI Stakeholder's Forum on Dec 30, 2009

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