BBMRI Stakeholder's blog

Innovation in Healthcare

The second edition of the conference entitled 'Innovation in Healthcare: from Research to Market' will be held from 30 to 31 March 2011 in Brussels, Belgium. This conference will bring together the key stakeholders of the healthcare sector to highlight and discuss the policy developments needed for research and innovation in healthcare at European and National level, in the frame of the Innovation Union and beyond.

The objective of the 2011 conference is to produce an analysis of the strengths, weaknesses, opportunities and threats (SWOT) for innovation in healthcare and make specific recommendations that will be addressed to policy-makers and stakeholders. The conference is being jointly organised by the services of the European Commission (DG Research and Innovation, DG Enterprise and Industry and DG Health and Consumers), in consultation with major stakeholders.

For more information, click here

New European Society for Biobanking

ESBB (European, Middle Eastern and African Society for Biopreservation and Biobanking) is a society of biobankers and related groups of people interested in the biobanking of human and non-human biological materials and will investigate collaborative potential in Europe, the Middle East and Africa.

ESBB aims to become a chapter of the US-based International Society for Biological and Environmental Repositories (ISBER) and to work collaboratively with this society as well as with the Global Biological Resource Centre Network project (GBRCN) and BBMRI.

For more information, click here

 

Mayo Clinic Biobank appoints Patient Advisory Board

 

According to the presdigious Mayo Clinic, Rochester, Minnesota, USA -  "Community engagement is based on the assumption that citizens can (and must) play a role in the governance of research, offering suggestions and ongoing advice.”

Mayo’s biobank has appointed a Community Advisory Board (CAB) to ensure that the voice of the community is heard in the development of the biobank’s policies.  The CAB helps decide which researchers may use the biobank.

The CAB also will consider whether Mayo should include children in the biobank, re-contact participants for more information, share research data with other institutions, and return any genetic results to biobank participants.

For more information, click here

 

European Parliament Hearing, Brussels

On October 26, 2010 a Public Hearing on Health-Related Research Infrastructures was held in the European Parliament. You can access the programme at ISC or listen via webstream to the presentations.

First large-scale biobank in an Arabic country - Qatar

The first very large population-based study involving the collection of biological samples in an Arabic country is being established in Qatar. The Qatar Biobank is being established by the Qatar Foundation for Education, Science, and Community Development (QF) and Qatar’s Supreme Council of Health.   Public health experts from Imperial College London - Elio Riboli (co-ordinator of the European Prospective Investigation of Chronic Diseases (EPIC), which has collected data from over 500,000 people over 15 years) and Paul Elliott (steering committee of UK Biobank) are involved in the design and implementation of the project.

For more information, click here

Public Engagement with Research

A new Concordat for Engaging the Public with Research was recently launched by the UK’s research funding bodies.

The aim of the Concordat is to create a greater focus on and help embed public engagement with research across all disciplines in the higher education and research sectors.

PatientPartner Final Workshop - Poster Presentation

 Delivering a poster in the PatientPartner final stakeholder workshop in Brussels on Dec 7th and 8th.

Download PatientPartner Poster

PatientPartner is a three year project within the 7th Framework program funded by the European Commission. The study is taking a look at the part that patient organisations play and are willing to play in clinical trials is focusing its attention on clinical trials with children, the use of biobanks and ethical issues.

 

BBMRI: The Industry Perspective

Dr. David Cox, senior vice-president at Pfizer and a member of BBMRI's scientific advisory board, recently gave his considered opinion to on the role that industry could play in the research infrastructure.

In the Medicaldevice.com article, Dr. Cox addresses the potential impacts, obstacles and industry contributions that are likely to arise once BBMRI is implemented.

To access the article in full, click here

 

BBMRI "Biobanking for Science" conference presentations available

Presentations from the BBMRI "Biobanking for Science" conference, which took place on September 27-28, 2010, in Amsterdam, are now available online. 

Keynote speakers include Daan Hommes on "Integrating Electronic Patient Records and Biobanking", Tom Hudson describing "Translating Cancer Genomes into Personalized Health and Disease Management" and David Cox speaking on "Private Public Collaboration and Biobanking Science"

To view pdf copies of the presentations delivered, click here

Involving publics in biobank research and governance

 

The UK Biobank Ethics and Governance Council has published a very interesting report on a number of different methods of public involvement in biobank governance. In a very wide-ranging report, the council reviews the different models proposed during a workshop in December 2009, and offers its own opinion on the pros and cons of each method. 

Download the Workshop Report here

Biobanking gets Social

 

There is a great buzz around biobanking in Europe these days and it can be hard to keep up with everything. It is even difficult to keep up with the on-line resources aimed at making it easier to keep up with everything.

LinkedIn has fast become an online focus for active discussions and information sharing on a whole range of topics related to biobanking.  A new group has been set up on LinkedIn called "EMEA Chapter Interest Group" that is exploring the possibility of creating an EMEA (Europe, Middle East and Africa) Chapter of ISBER (544 members as of 27/08/2010).  Another interesting group is the Biorepository Hub (923 members as of 27/08/2010).  Sign up for LinkedIn and join the discussions!

Another active online group is the EU-funded Gen2Phen forum, The Gen2Phen project aims to collect holistic views from the Genotype-To-Phenotype (G2P) community, and has open dicussions on biobanking-related items such as Informatics and Bioresource Impact Factors.  Membership of these groups requires approval by the organisers.

It does feel like biobanking-related topics are finally getting tested in an open manner on the web.

Stakeholders Forum Report - June 2010

The official report from the BBMRI Stakeholder's Forum meeting, June 9th, 2010, Brussels is now available online. To download the report, click below, or visit the link below:

Download The Stakeholders Forum Report - A Step Closer.

http://www.bbmri.eu/index.php/stakeholders-forum/79

Latest Developments in European Biobanking

United Kingdom

The UK Biobank has announced that it has exceeded the original recruitment target of 500,000 individuals aged 40-69.

Germany

The German National Cohort is seeking to recruit 200,000 participants.  In comparison to the UK version, even though the German Biobank will have fewer recruits, it has a wider age range (healthy adults between 20 and 69), the project will also involve more detailed clinical analysis, to include repeat medical examinations after five years and magnetic resonance imaging (MRI) scanning of the major organs of 40,000 participants to look for early signs of disease.

Sweden

A planned new facility at the Karolinska Institutet in Sweden hopes to create the world’s largest biobank by creating a national infrastructure to join individual Swedish biobank projects.

National Nodes for BBMRI beginning to take shape

The European infrastructure BBMRI has received official commitment for financial support from several EU states (Austria, Italy, Sweden, The Netherlands, Greece, Czech Republic) for its construction phase planned 2011.

In addition, countries such as Austria, The Netherlands, Sweden, Finland and Malta are providing funds to support construction of national infrastructures for biobanks, which will be linked to BBMRI, and the issue is under consideration in the relevant ministries from ten other European countries. 

Swedish National Hub

Dutch National Hub

Supplemental to state funds, efforts are being made to seek the support of the European regions - indeed several regions are supportive of biobanks as their regional impact is significant both in relation to socio-economic and R&D impact. 

Moreover, according to reports, it is quite possible that a priority  for biobanks and their integration into European infrastructure could be launched within the framework of infrastructure financing through the general excellence loan of the European Investment Bank (EIB). This would allow Member States to apply for recurrent funding for such infrastructure. 

OBIBA - Open source software suite for biobanks

The P3G consortium has released the first versions of its OBIBA software for biobanks.

Biobanks need to equip themselves with modern working performance tools for the management of the vast amounts of information being generated by modern biobanking practices.  This search for progressive techniques and tools should be moderated according to the requirements of each biobank but can not be too excessive in which case it could lead to situations of inefficient structures.

A software development unit based in Quebec has initiated a project OBIBA to share its technology and its development deserves to be studied in more detail. This project proposes a modular approach towards the management of biobanks and provides a set of tools to respond to the various needs which are clearly identifiable in the management of biobanks. 

The application can be customized and integrated to create a complete biobank information management system, composed of modules, covering for example, the collection of patient information or the monitoring of consents, but also the aggregation and retrieval of data and information. 

This software solution could therefore be suited to certain needs expressed by biobanks and can be implemented in a reasonable amount of time. Its adequacy with the needs of each biobank remains to be assessed and its integration in various environments will require some adjustment.  However, as the technologies chosen are Open Source this will promote its development and external distribution among the biobanking community.

Presentations now available from Stakeholder's Forum meeting, Brussels

Presentations from the BBMRI Stakeholder Forum meeting, June 9th, 2010, Brussels, are now available online.  To view pdf copies of the presentations delivered, click here

The risks to privacy of new technologies

Emerging technologies such as new identification and surveillance technologies, biometrics, on-the-spot DNA sequencing and technologies for human enhancementoffer significant benefits but also risks to our privacy. How to deal with these risks is the subject of a new three-year project funded by the European Commission, called PRESCIENT.

PRESCIENT is the acronym for Privacy and Emerging Sciences and Technologies. The project aims to establish a new framework for privacy and ethical considerations arising from emerging technologies.

“New technologies can often be used in a way that undermines the right to privacy because they facilitate the collection, storage, processing and combination of personal data by security agencies and businesses,” says Michael Friedewald, head of the ICT research unit at the Fraunhofer Institute for Systems and Innovation Research (ISI) and co-ordinator of the project. ”We have seen that with the rise of social networking websites such as Facebook, MySpace and Bebo. They have led to a dramatic increase in the amount of personal information available online, which is routinely misappropriated for identity theft or other fraudulent purposes. We know that employers also mine these sites in order to vet prospective employees. RFID and biometrics can also be used in ways invidious to our privacy. For more information, click here

Sir Ken Robinson - always worth watching!

Why don't we get the best out of people? Sir Ken Robinson argues that it's because we've been educated to become good workers, rather than creative thinkers. Students with restless minds and bodies -- far from being cultivated for their energy and curiosity -- are ignored or even stigmatized, with terrible consequences.

Ken Robinson has delivered two infamous presentations as part of the annual TED Conference in Long Beach, California.

Watch his latest presentation here

BBMRI – "Biobanking for Science” Conference

On September 23-25, 2010, the BBMRI consortium will organise the “BBMRI – Biobanking for Science” conference focusing on scientific excellence in the various aspects of biobanking at the Novotel Amsterdam City, Amsterdam, NL.   The conference "BBMRI - Biobanking for Science” brings together leading scientists in the field, young scientists, biobanking managers and practitioners to discuss the science and new approaches in cutting edge biobank research.  

The meeting is organised by the BBMRI Steering Committee, Work Package Leaders and Chairs, the Executive Management Team from the Medical University Graz and the University of Turku. The local organiser is Professor Gert-Jan van Ommen from Leiden University Medical Centre (LUMC), NL, scientific director of BBMRI-NL.  

Pre-registration will be through personal invitation to all BBMRI Participants and Associated Organisations.  After June 15^th, 2010, registration is opened to the broader community. The registration will be open until July 23^rd 2010.

For more information, click here

Wired: The Sorry State of Cancer Biobanking in USA

Carolyn Compton, The National Cancer Institute (NCI)'s chief biobanking expert gave a revealing interview recently in Wired Magazine.

In the article, Compton laments on the current state of cancer biobanking practices and the problems of the  Cancer Genome Atlas. to acquire appropriate biospecimen samples.

When the NCI drew up its plans for the atlas, dozens of bio-repositories in the US assured the institute that at least 500 samples of each type of tumor could be provided easily. Once the project was under way, however, the researchers got a series of bruising reality checks.

"One bank at a major university claimed to have more than 12,000 samples of glioblastoma in its collection. Only 18 of those were good enough to use. The rate of unacceptable shipments from other institutions ran as high as 99 percent." she said.

To access the full article, click here