BBMRI.NL 2.0
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In this BBMRI.nl newsletter:

How about your work for BBMRI.nl? Interview series

What excites and challenges our BBMRI.nl investigators the most? We asked BBMRI.nl consortium members about their work, especially during the present COVID-19 pandemic. How do they see the future for our activities? A new interview series that showcases the variety of work in BBMRI.nl
 
We first spoke with Dr. P. Eline Slagboom, professor of molecular epidemiology at the Leiden UMC in The Netherlands and a board member of BBMRI.nl.


Eline Slagboom

Next in the series, Dr. Erik Steinfelder, Biobanking Market Development Director at Thermo Fisher Scientific and chair of the BBMRI.nl Patient and Public Advisory Council. 


Erik Steinfelder
 

How to create the right conditions for sustainable biobanking in the Netherlands

For their sustainability, biobanks partly depend on outside factors that either promote or hinder sustainability. Together with biobanks and biobank users from academia and industry, BBMRI.nl has drafted recommendations across nine themes (in Dutch), towards creating the right conditions for sustainable biobanking in the Netherlands. BBMRI.nl invites all Dutch stakeholders to work with us on translating these recommendations into practice.
 
Please visit the BBMRI.nl webpage on sustainable biobanking.

BBMRI.nl supports the Dutch COVID-19 Data Support Programme 

BBMRI.nl provided support for the following items of the Dutch COVID-19 data support programme launched by Health-RI.  

  • Urgent action is required to preserve material and samples from COVID-19 patients in a national COVID-19 biobank and efforts are being made to provide a legal framework for data and sample collection. 
  • It is crucial that citizens can make a well-informed decision to consent or object to the use of their data and samples for COVID-19 research, and that their decision is registered and can be checked. A harmonized national COVID-19 citizen control registry aims at avoiding local and fragmented efforts in seeking consent or providing an option to opt-out.
  • ELSI support for COVID-19 researchers
    The ELSI Servicedesk has been developing formats and provides an overview of information on guidelines and procedures for COVID-19 related research. These are supplemented regularly with new guidelines or procedures (in Dutch). 
  • A guide to data governance in COVID-19 studies (in Dutch) by Health-RI. A useful starter kit for new COVID-19 studies, and other studies, that want to make their data available to other researchers. 
  • Standard data and material transfer agreement templates were recently approved by all UMC’s and is available for download via the ELSI servicedesk. 
UPDATES

Focus meeting to kick-start Dutch cBioPortal community

All cBioPortal users and developers are invited to the first Dutch cBioPortal Focus meeting.  It will be the first official cBioPortal community meeting and will help cBioPortal users and IT-developers to get the most out of their platform. The online event, organized by Health-RI and DTL, will be held on September 9th. Find out more about the event here.

How to deal with incidental findings. Guide for researchers now available in English

BBMRI.nl has developed a guide for researchers and research groups. It presents a practical and ethical framework for detecting, dealing with and informing about incidental findings in (biobank) research. As a result of a joint effort of BBMRI.nl and BBMRI-ERIC, the guide has now been translated into English. Read our full news story about the guide here.

On the occasion of the publication of the English translation, BBMRI-ERIC and BBMRI.nl together organized a webinar with Dr. Eline Bunnik, one of the authors of the guide. To see the webinar, click on the recording of the webinar.

The ELSI Servicedesk received its 100th question!

Guidance and answers on ethical, legal and societal issues that research on personalized medicine raises. That is what the ELSI Servicedesk promised to deliver when this service was launched in July 2018. We now celebrate the symbolic milestone of our 100th question and that the medical research community has found its way to and use of this platform. 

The ELSI Servicedesk website is written in Dutch and designed to answer questions from researchers, caregivers, patient advocates and policy makers. Questions can be asked in English as well. Find out more here.

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