White papers

BBMRI-NL Workshop Report

Sustainability is a pressing issue for individual infrastructures and for national and international policymakers and funders. To support the Dutch infrastructure field with this challenge a meeting was held aimed at gathering and sharing experiences, challenges, and best practices; and finding main causes and overarching solutions. The meeting was successful in bringing together a diverse group of participants to discuss issues related to sustainability. This provided a rich yield of information, presented in the BBMRI-NL Workshop report.

Whitepaper Self Measurements

Self-measurement can bridge the gap between the need felt by many people in society to have more control over their health and health data on the one hand, and keeping those people involved in research on the other hand. This requires cooperation between the participants, research organisations and the government authorities concerned. The Whitepaper Self measurements shows that the use of self-measurement methods does not diminish the role of biobanks and other research organisations but changes it.

The Donor as Partner

In November 2014, the book ‘The donor as partner’ was distributed among biobanking coordinators and patient advocacy groups. The book sums up the methods and levels of patient participation in the governance of biobanks and serves as a guideline for biobanks and participants alike to find the most appropriate model of participation for their specific situation. You can find the pdf here, in English and Dutch (or you can order a paper copy by sending an email to info@bbmri.nl). 

More detailed information about the book can be found here.