BBMRI-NL’s MyBiobank portal
MyBiobank is an online portal that biobanks can use for 2-way communication with their participants.
What is BBMRI-NL’s MyBiobank portal?
MyBiobank is an online portal that biobanks can use for 2-way communication with their participants. For instance, the Dutch Twin Registry (NTR) uses MyBiobank, dubbed in their case MyNTR, to post questionnaires for their participants to fill out. In return for their collaboration, participants receive aggregated results from the research on their response to the questionnaires. Also, they can share experiences via the portal.
Why using MyBiobank portal?
MyBiobank enables participants in a population biobank:
- to exercise certain (such as consent, information, information feedback, and benefit sharing), with due regard to the statutory exemptions to these rights;
- to enrich the biobank through self-reporting.
MyBiobank provides biobanks with an online tool:
- to reduce time and costs of organizing, distributing, collecting and processing questionnaires;
- to honour certain participants’ rights and to help meet statutory requirements;
- to build and maintain trust and transparency among participants, researchers, research ethics committees, supervisory authorities, funders and the public;
- promote participant engagement;
- to help “valorise” findings, knowledge and data;
- to share benefits, in the form of aggregated feedback, with participants by providing them with a digital avenue to get to see “what’s in it for him or her.”
Who should use MyBiobank portal?
Any cohort interested, provided they have the resources to implement the system.
Status of My Biobank portal
The portal is in use at the Netherlands Twin Register and now available in a MyBBMRI format, an empty version that can be filled by other cohorts. This tool is therefore ready to be used by other cohorts, but resources are still necessary to implement the system locally.
How to start using My Biobank portal
The portal was designed and built open source and as such is available for use by third party population biobanks, subject to the agreement on the mode and terms of implementation.
Please contact Dr. G. Willemsen for more information.
Training information for My Biobank portal
A workshop can be provided at NTR, VU.
Support for My Biobank portal
Technical advice can be provided at NTR, VU.
Link to My Biobank portal page:
Not available. For a demo in English, click here
References and other links for My Biobank portal
Bovenberg J, Kattenberg M, Baselmans B, Sinke M, Hoekstra R, Boomsma DI, Willemsen G. Enhancing biobank participants’rights from paper to portal. Scripted 2016, 13, 1.
For more information on My Biobank portal contact:
BBMRI-NL’s contact: Dr. G. Willemsen, Free University Amsterdam firstname.lastname@example.org
or contact the Service Desk