Sonja EakerChair. Preparatory group of Biobank Sweden

Chef Regional biobank centre Uppsala Örebro region

Research

Infrastructure of

Biobank SwedenTobias Sjöblom

Director, Research Infrastructure of Biobank SwedenDirector, BBMRI.se

Start-up phase (2018-2019)

It takes a lot of meetings to re-establish trust and get to work

Steering Group

NBR/Nat Adv Board

WG-1

WG-2

Service co-ordinators

2018

J F M A J J A S O N DM

2017

J F M A J J A S OM N D

2016

MJ F M A J J A S O N D

Deliverables and achievements (selected)

• Organization established and operational at the national as well as local level.

• Key roles recruited and delivering results.

• Financial administration and travel support operational.

• Reporting of activities and output established.

• Local actions to support sample output supported.

Stretch goal:

• Sweden contributed 10% of all CRC cases in the pan-EuropeanBBMRI ERIC ADOPT project.

Sample output from the participating service facilities (2018)

NodeBiobank

staff (FTE)

Blood sample output Tissue sample output

Projects Donors Vials Projects Donors Specimens

Skåne 23.2 139 23346 152983 69 103 4456

Göteborg 24 20 7823 8369 62 3073 3575

Linköping 8 9 3400 9400 27 574 1777

Örebro 4.4 13 3368 7155 21 2932 6395

Uppsala 22.8 20 3028 7238 49 2979 9777

Stockholm 72 61 65097 99414 179 14035 45790

Umeå 23.5 10 8562 11422 11 2488 2497

Total 178 272 114624 295981 418 26184 74267

Biobank Service Facilities at partner universities and healthcare providers (2018). In 2018, the universitiescontributed 31 MSEK, healthcare authorities 68 MSEK, and user fees 35 MSEK (26%) to thebiobank service facilities.

All partner biobanks are now actively providing samples to research, and the total blood sampleoutput to research was 295 981 vials which is double the output of 144 926vials recorded in 2016.

Government spending on biobank infrastructure

(connected with their BBMRI node, EUR/capita in 2019)

0,000,050,100,150,200,250,300,350,400,450,50

Governance in Biobank Sweden vs other EU countries

• 14/20 BBMRI nodes responded

• SE is a resource rich network-like node (NO, BE, DE, NL).

• Top governance groups predominantly national champions/ infrastructuremanagers, similar to BBMRI.se (2010-16).

• Few have representatives of the stakeholding institutions.

• No representation from healthcare providers (except CH).

• Governance structures more similar to BBMRI.se (2010-16) than to Biobank Sweden.

Who are the users of Biobank Sweden?

Users

Acad. Comm. Care MaleFe-

maleN/A Nat.

Inter-

nat.N/A

Basic

med.

Clinical

med.

Health

science

Bio-

techn.Other N/A

Skåne 64 6 57 63 64 0 119 8 0 0 123 0 4 0 0Göteborg 68 10 4 15 5 62 82 0 0 5 12 3 0 0 62Linköping 28 1 7 21 15 0 36 0 0 13 23 0 0 0 0Örebro 29 5 0 23 11 0 25 9 0 28 5 1 0 0 0Uppsala 50 19 0 36 33 0 49 0 20 5 60 3 0 1 0Stockholm 276 54 43 38 22 313 330 3 40 10 40 282 0 1 40Umeå 21 0 0 8 13 0 0 0 21 18 3 0 0 0 0

Total 536 95 111 204 163 375 641 20 81 79 266 289 4 2 102

NodeUsers Users Users

Users of Biobank Sweden. A total of 742 users relied on services from the Service Centers

participating in BIS during 2018.

Progress in local integration of biobank services at participating universities and

regions during 2016-2018

1. Agreement 2. Steering Group 3. Node-coordinator 4. Full integrationUmeå 3Uppsala 4Örebro 4Linköping 4Sthlm 3Göteborg 4Skåne 3

Status of national integration at end of 2018NodeIntegration

level

Full scale phase (2020-2026)

Revised organization from 2020

Major changes

• Revised organization

• Increased administrative support to WG1 and for web/communications

• All projects report to a Working Group

• IT projects planned and re-prioritized

• Substantial support for local implementation of national IT systems vs. increased sample output support.

• The national coordination projects are less bottom-up and more integrated with the governance model.

Areas of responsibilityfor national collaboration

WG Node Area of responsibility for national

collaboration

Scope Module

1, 2 Umeå Cohort enhancement and

exploitation

Development and local implementation of effective national solutions for

data re-use and tracking of analytical data in large cohorts. Evaluation of

existing cohorts for compatibility with current analysis methods.

Implementation of policy for return of results. Support to other nodes for

national implementation of data re-use.

7

2 Uppsala Healthcare integrated blood

biobanking

Support for implementation, development and upkeep of the national

program for healthcare integrated blood biobanking (SIB).

2 and 8

1 Uppsala Biobank Ethics and Law Provisioning of qualified legal advice in the field of biobank law as needed

by BIS. Participation in BBMRI ERIC Common Service ELSI.

2 and 5

1,2 Stockholm

/Uppsala

IT strategy Coordination, development and implementation of National IT strategy.

Shared responsibility between Stockholm (IT strategist and coordinated IT

system manager) and Uppsala (IT project manager).

7

2 Stockholm Large scale sample

processing

Actions to enable and facilitate national use of unique sample processing

resources (DNA/RNA extraction and reformatting) primarily available at KI

Biobank.

9

2 Örebro Cytology biobanking Maintenance and development of cytology biobanking in gynaecological

and non-gynaecological cancers.

8

1 Linköping Education and Dissemination Support continuously updated training catalogue. Co-ordination of planning

of freezer capacity for distributed blood biobanking in Swedish healthcare

systems.

6, 8

2 Göteborg Sample quality Evaluation of existing cohorts for compatibility with current analysis

methods. Optimization of national sample handling systems and workflow

by evaluating the impact of preanalytical factors.

6

2 Lund/

Skåne

Tissue biobanking Development and support for national implementation of distributed tissue

biobanking for cancer research. Development of national harmonization

actions in pathology biobanking.

8

Work packages

4

11,8 15,2

5,6 9,1 1,1

139

5,5

3

Areas of improvement

Organization

• Link between steering committee members and local biobank service facilities is key for the governance model to work. Thismitigates the ’top-down’ sensation for some local managers.

• Involving KOLs in the governance of BIS in a constructíve way.

International

• Increased Nordic and European collaboration.

Att belöna

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