Biobank registries in Europe struggle with similar challenges
Common goal: “Structured yellow pages of biobanks” – Incentives for biobanks to register are absolutely needed
20.02.2015. National biobank registries
throughout Europe prefer to establish “structured yellow pages” in order to make their countries’ biobank
resources visible. Some of them also focus on additionally establishing “sample
locators” as a means to foster scientific collaboration. However, all
registries face similar challenges in achieving completeness of registration.
This became apparent during the meeting of the biobank registries from seven
European countries on 18th and 19th February 2015 in
Berlin. Incentives for registration set by the national governments could greatly
facilitate the process. The participants of the meeting expressed the wish to
have more communication between them at the working level.
Seven national biobank registries and several
representatives from academic institutions as well as from the European biobank
infrastructure BBMRI-ERIC followed the invitation of the German Biobank
Registry which is run by the TMF. The aim of the meeting was to mutually learn
from the different approaches of the registries and to discuss aspects of
standardization and quality. Due to the diverse historical, political and
regulative situation in Austria, Belgium, Denmark, Finland, the Netherlands,
Sweden, and Germany, biobank registries have evolved quite differently in these
countries.
Legal
obligation to register biobanks
In some
countries, laws demand the registration of biobanks. This is, for instance,
true for Finland, as Kaisa Silander (National Institute for Health and Welfare,
Finland) explained. The Biobank Act, which came into force in September 2013,
aims at promoting openness in the use of human biological samples and allows
wide consent which may also be applied to old sample collections. By end of
2015, nine large biobanks that are being established simultaneously will be
registered in the Finnish Biobank Network BBMRI.fi.
Sweden as well has a legal obligation for biobanks
to register: Any sample stored in health care biobanks needs to be registered
in the Swedish Biobank Registry (SBR) at the National Board of Health and
Welfare. The aim is to be able to find samples in case of consent withdrawal.
However, as Loreana Norlin and Roxana Merino Martinez (Karolinska Institutet,
Sweden) pointed out, no diagnosis and clinical information or linkage to other
registers is available in the SBR. This is why in 2012 the BBMRI.se register
was launched to gather meta-data on sample collections and research studies
using human biological samples, including diagnosis and clinical information on
a meta level. The BBMRI.se register – building on the first version of the
standard vocabulary MIABIS discussed later during the meeting – currently
covers 114 sample collections with samples from approximately 1.4 million
donors. But as Loreana Norlin said it was tough to get the register started and
keep the people motivated in pursuing to populate the register with their data.
In the very near future a new register will be
built in Sweden.
Some countries have more
than one registry
Belgium even has three Biobank registries: The
Belgium Virtual Tumourbank (BVT), the Biothèque de la Fédération
Wallonie-Bruxelles, and the Flemish biobanking initiative CMI, as Annelies
Debucquoy from the BVT, and, in her function as the representative of the
Belgian Biobank Consensus Platform explained. In Belgium, interestingly,
biobanks get financial support from the government, for example to register in
the BVT, which is a very strong motivation for the sake of completeness. The three
registers aim at creating a Belgian Virtual Biobank Catalogue in compliance
with BBMRI-ERIC guidelines by the end of 2015. The harmonization of the dataset
for registration of the samples has already been achieved. However, access to
the data is restricted to those who have a Belgian ID and even only after
registration.
In
contrast, Denmark enjoys a very open access policy. As Bartlomiej Wilkowski (Statens
Serum Institute, Denmark) pointed out the Biobank Register at the Danish
National Biobank has been launched in 2013 and integrates data from various
Danish registers and biobanks. Motivations for the initiative were to provide
information on existing samples for epidemiological register-based research and
to support clinical hospital biobanks. The biobank register system will allow
to track diagnoses and samples of individuals throughout their lives so that
biomarkers may be detected in earlier samples if a person develops a specific
disease later on. 16.3 million samples from 5.1 million donors are openly
searchable by researchers from all over the world.
Searching for samples
The Austrian BBMRI.at Platform also aims at
providing not only aggregated data on biobanks and sample collections but also
discusses how information on samples, donors and molecular data may be accessed
in future. Horst Pichler (University of Klagenfurt, Austria) presented the data
model and explained that the data are administered by the ten Austrian biobank
partners. The Austrian platform uses Liferay, which will also being used by the
upcoming new Swedish register and has been applied by the German Biobank Registry
as well. This enables knowledge sharing and mutual support for future IT
developments between the registries.
An
alternative approach to the administration of data by the biobanks may be to
provide the facilities for an automated import from a local biobank catalogue. This
is what the BBMRI.nl initiative tries to achieve in order to connect the more
than 200 biobanks that exist in the Netherlands. However, as David van
Enckevort (University Medical Center Groningen, Netherlands) explained, at the
moment the catalogue is rather a basic list of biobanks.
Soft incentives are not
enough
Roman
Siddiqui (TMF) stressed the aspects of avoiding redundant research and
transparency as two of the main purposes for a structured “yellow page”
catalogue of national biobanks. However, even if biobank leaders do agree with
these arguments, this does not always result in them registering their biobank.
The seven European biobank register representatives agreed that altruism will
not be the driving force in guaranteeing the completeness of the registries.
Regulatory or funding policies provided by governments, funding organizations
or also journals would be much more effective.
In Germany, this was very obvious in 2010 when a tender
initiative by the Ministry of Research and Education to build centralized
biobanks at university hospitals requested the registration of the biobanks
prior to application: In only a few days before submission deadline 79 biobanks
registered in the German Biobank Registry. As discussed, the meeting
participants concluded that the European Biobank Infrastructure (BBMRI-ERIC) should
strengthen its support to the national register initiatives by giving official advice
to the governments, to include their register infrastructures within their
policies.
A standard vocabulary for
biobank registries
In order to facilitate communication between
biobank registries and to stimulate cross-border research collaborations the
“Minimum Information About Biobank data Sharing” (MIABIS) has been developed as
a guideline which several of the biobank registries already use for their data
models. The first version of the data set has been developed and published by
BBMRI.se in 2012.
A MIABIS working group was established in 2013 and
MIABIS 2.0 Core released in November 2014. “There has definitely been a need
for an ontology” Loreana Norlin said, as there is a lot of interest in the
working group. The results are available on the MIABIS wiki page [bbmri-wiki.wikidot.com/en.dataset]
and will be published in due course.
Quality standards are
still widely unknown
Daniela Skrowny (University Medicine Goettingen)
presented two standards for quality in biobanks: BRISQ (Biospecimen Reporting
for Improved Study Quality) is intended for clinical biobanks and used to
describe the quality of the whole study rather than the quality of single
samples. The journal Nature already recommends referring to the BRISQ reporting
guidelines. SPREC (Sample Pre-analytical Code) is used to document the quality
of samples where pre-analytical factors are coded in seven fields. A limitation
is that this standard does not take into account sample processing. However,
according to Daniela Skrowny, the main problem is that BRISQ as well as SPREC
still are too much unknown in the scientific biobank community.
As an example of how process quality of biobanks
may be defined and captured Robert Reihs (Medical University Graz, Austria)
presented RD-Connect, a platform to connect databases, registries, biobanks and
clinical bioinformatics for rare diseases. Amongst other things the portal
enables the mapping of different Standard Operating Procedures used in the
different resources.
Still an open question is how information on
quality should be displayed in a biobank register. The participants agreed that
it will be impossible to provide a complete picture for each single biobank in
the register. Rather the biobanks should check a box in the register to confirm
that they are able to describe their quality processes in a standardized
manner. Registries could then provide a service to facilitate the communication
between the requesting researcher and the biobank.
Define a real use case
before building a specimen locator
The possible role of Unique Biobank Identifiers and
challenges of their generation were also discussed vividly during the meeting. Different
systems do already exist at the national levels. The suggestion was made that
the national registries could be the entity to supply biobank IDs. These unique
identifiers would be especially important when building a specimen locator at
the European level as BBMRI-ERIC intends to do.
Given the diversity of the legal and technical
conditions in the European countries, establishing an overarching specimen
locator will be a difficult task. Petr Holub (BBMRI-ERIC, Graz) pointed out
that a clear definition of a real use case would be needed before starting to
develop something. Overall, the participants of the meeting agreed that
providing aggregate information on biobanks at the country as well as on the
European level still is very important.
The European biobank infrastructure should
acknowledge and build on what is already available in the countries. Cooperation
should also be sought with international partners beyond Europe as well as with
infrastructures from other fields of medical research.
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Group picture (f.l.t.r.): Loreana Norlin (Karolinska Institutet, Stockholm, Sweden), Horst Pilcher (University of Klagenfurt, Austria), Roxana Merino Martinez (Karolinska Institutet, Stockholm, Sweden), Robert Reihs (Medical University of Graz, Austria), David van Enckevort (UMCG, Groningen, Netherlands), Heimo Müller (Medical University of Graz, Austria), Jörg Geiger (University Hospital, Würzburg, Germany), Kaisa Silander (National Institute for Health and Welfare, Helsinki, Finland), Roman Siddiqui (TMF e.V., Berlin, Germany), Mathias Wieland (University Hospital Heidelberg, Germany), Annelies Debucquoy (Belgian Cancer Registry - BBMRI, Belgium), Ines Leb (FAU Nürnberg-Erlangen, Germany), Bartlomiej Wilkowski (Statens Serum Institut, Copenhagen, Denmark), Daniela Skrowny (Medical University of Göttingen, Germany), Petr Holub (BBMRI-ERIC, Graz, Austria), Sebastian Claudius Semler (TMF e.V., Berlin, Germany), Guy Redding (Fraunhofer IZI, Leipzig, Germany), Katharina Zoldan (Fraunhofer IZI, Leipzig, Gemany)
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The biobank registry speakers (f.l.t.r.): Roman Siddiqui (German Biobank Registry), Kaisa Silander (Finnish Biobank Network, KITE, BBMRI.fi), David van Enckevort (Catalogue of Biobanks, BBMRI.nl), Loreana Norlin (Sample Collection Register, BBMRI.se), Annelies Debucquoy (Belgian Cancer Registry, BBMRI.be), Bartlomiej Wilkowski (Danish National Biobank Register), Horst Pichler (BBMRI.at-Platform)
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Downloads
Programme Details:
- Workshop agenda & outline
Workshop Presentations:
- 01. Sebastian C. Semler: TMF – a brief introduction [pdf | 532 kB]
- 02. Horst Pichler: Catalogue of Austrian Biobanks [pdf | 2 MB]
- 03. Annelies Debucquoy: Belgian Biobank registries [pdf | 2 MB]
- 04. Bartłomiej Wilkowski: Danish National Biobank [pdf | 1 MB]
- 05. Kaisa Silander: Biobank registers in Finland [pdf | 2 MB]
- 06. David van Enckevort: Biobanks & Registers in The Netherlands [pdf | 1 MB]
- 07. Roxana Merino Martinez, Loreana Norlin: The BBMRI.se Sample Collection Register [pdf | 960 kB]
- 08. Roman Siddiqui: German Biobank Registry [pdf | 2 MB]
- 09. Murat Sariyar, Roman Siddiqui: Resume and Conclusions from Day 1 [pdf | 220 kB]
- 10. Loreana Norlin: MIABIS Minimum Information About BIobank data Sharing [pdf | 1 MB]
- 11. David van Enckevort: MIABIS as a modular system [pdf | 2 MB]
- 12. Daniela Skrowny: Biomaterial Quality Issues in Registers [pdf | 1 MB]
- 13. Heimo Müller, Robert Reihs: Defining and Capturing Process Quality in RD-Connect [pdf | 2 MB]
Workshop Pictures:
- Group picture [JPEG | 876 KB]
- The biobank registry speakers [JPEG | 999 KB]