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In this BBMRI.nl newsletter:

BBMRI.nl interview series: Arfan Ikram and Dorret Boomsma 

To showcase the variety of work in BBMRI.nl, we asked BBMRI.nl investigators about their work. What excites and challenges them the most, especially during the present COVID-19 pandemic? And how do they see the future for our activities?
 
We spoke with Prof. Arfan Ikram, representing the Rotterdam study on part of ErasmusMC in BBMRI. 

Next in the series Prof. Dorret Boomsma, from the department of Biological Psychology at the Vrije Universiteit Amsterdam, member of the KNAW (Royal Netherlands Academy of Science).

In memory of Professor emeritus Gert-Jan van Ommen (1947 - 2020)


With great sadness we learned that our admired colleague Gert-Jan van Ommen passed away on Saturday November 7.

Gert-Jan was very much committed to creating collective research infrastructures like BBMRI and later Health-RI. He was a founding member in 2007 of the European Biobanking Infrastructure BBMRI (later to become BBMRI-ERIC) and in 2009 of BBMRI-NL which he directed from 2009 until 2014. His network and knowledge opened doors for the biobank community nationally and internationally. He always impressed the BBMRI community with his insights and his comprehension of present and future challenges and had a great ability to bring people together. 

Read more here.

CAPACITY, investigating the role of cardiovascular disease in COVID-19

CAPACITY is a patient registry in which clinical data from patients hospitalized with COVID-19 is collected. It was established to determine the role of cardiovascular disease in the COVID-19 pandemic. Scientist can use these data to better understand the disease progression and the potential co-existence of cardiovascular complications in COVID-19 patients. Scientists are encouraged to file their proposals and requests for use of the data. 

Read more here.  


 

Statistics Netherlands is keen on sharing data for health research

Sharing data is essential for making optimal use of data and opens new research opportunities. That is why BBMRI.nl and Health-RI host a series of expert sessions on making health and healthcare data available for research. BBMRI.nl interviewed two experts at Statistics Netherlands (CBS) to ask them about the role of CBS.

Read more here.

Dutch Biobank Community Festively launched

More than 120 people joined the official and festive on-line launch of the Health-RI Biobank Community. For many participants it also marked the closing of the Europe Biobank Week on November 20. BBMRI.nl, Parelsnoer (clinical biobanks of Dutch UMC’s) and Health-RI now joined forces in the Health-RI Biobank Community. 

News article about the launch
Health-RI Biobank Community page

How to make health data available for research? The Experts Meet.

BBMRI.nl and Health-RI organised three virtual expert meetings to discuss different practical approaches to making health data available for scientific use. Three sessions with projects presenting their approach, all with their own strengths and weaknesses.

 

  • Fatima El Messlaki from CBS, (Statistics Netherlands) and Saskia Houterman from the Netherlands Heart Registration (NHR). Read more here.
  • Wanda Hermans-Van Ast and Erik van Iperen about the CAPACITY study of the Durrer Center; Vincent Ho and Peter Prinsen from the Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland; IKNL) Read more here.
  • Trynke de Jong on the processes to find, access, request, share and link data within Lifelines. Pascal Suppers highlighted the experiences within DataHub, an institutional data broker. Read more here.

CAPgemini Report: Health data must be more accessible

It is not a lack of health-related data, the available health-data is not being reused enough. This is the principal finding CAPgemini Invent published in the report commissioned by the Dutch Ministry of Health, Welfare and Sport (VWS). For this report CAPgemini Invent consulted initiatives involved in making healthcare data accessible for artificial intelligence, including BBMRI.nl and Healh-RI.  When all available healthcare data is accessible Artificial Intelligence can be put to use optimally, to realize data driven healthcare.

CAPgemini Invent report ‘Nulmeting databeschikbaarheid in gezondheid en zorg’ (Dutch) 

Exploiting CRC data to its full potential

The new and updated CRC platform (part of the larger BBMRI platform) contains a comprehensive overview of available biomaterials and omics data within clinical studies for Colorectal Cancer. It connects researchers and clinicians by allowing the sharing of clinical samples to exploit available data to its full potential. The core of the new CRC platform is the Dutch Prospective Colorectal Cancer Cohort (PLCRC), an existing infrastructure which has now been extended with 17 clinical studies and cohorts encompassing >20,000 biological samples of CRC patients.

Read more.

Season's Greetings

With best wishes for the Holiday season and the coming year.

UPDATES

Health-RI Conference 2021

Save the date! On March 4th, 2021, Health-RI will update you on recent activities. Health-RI communities will give flash-presentations. There will be poster-presentations and an exhibitor network session. And all of that, in a new online environment. 

More information soon on the Health-RI Conference webpage.

Generic Policy for Access to and Sharing of COVID-19 Data 

Health-RI and the NFU have published a data access policy to support the rapid and efficient secondary use of COVID-19 related data collected by Dutch medical centres in line with applicable laws, regulations and ethical principles. 

Read more here.

New ELSI-flowcharts for researchers that use patient data or tissue

The ELSI Servicedesk and the Health-RI Registry in a Box initiative published two interactive flowcharts for researchers in the Netherlands that use patient data or patient tissue. One that helps to choose the right consent procedure and another that helps to find the necessary agreements.

Check the full description and the link to the interactive guidance (in Dutch).

Read more here.

Workshops how to create FAIR metadata for COVID-19 data portal

The Dutch research community and healthcare generate much COVID-19 related data. Health-RI, the GO FAIR foundation and ZonMw are developing COVID FAIR data services and a national COVID-19 data portal that will help researchers find and reuse this data. Both are instrumental to facilitate and speed up research on COVID-19. As part of this project, data stewards and researchers from different institutes learn how to create FAIR machine actionable metadata. All workshops have been recorded and are available.

See the workshop overview

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