Advancing genetic research with a digital platform for VUmc

A secure, open-source digital portal promoting knowledge exchange and enhancement

Overview

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Challenge

Twins provide a unique resource for genetic research. The Dutch Twin Registry contributes to scientific research into twins, with the aim of investigating the contribution of genetic predisposition to growth, development, personality, disease and risk factors for certain disorders.

Since the foundation in 1987, data from participants who were willing to collaborate on scientific research have been kept up to date. By completing questionnaires, they make an important contribution to scientific and medical research into the development of behavior and health in children and young people.

WORTH was tasked by the Twin Registry to create an online community portal with secure means of communicating and exchanging information with Biobank's donors. For the portal, the Twin Registry established the following objectives:
- Let donors administer their own personal data
- Publish new questionnaires to donors to complete.
- Automate the publication of personalised reports to the donors
while keeping privacy in tact.
- Create a central, online, secure portal to communicate with the
donors of the Biobank.

"The site of the MYNTR looks beautiful. I really like this personal portal and I think it's great to be able to view research results."

Users of the portal

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The approach

The solution WORTH built is a customised portal, containing data from 80,000 individuals collected over 25 years and complies with government digital strategy guidelines. The portal allows donors to manage their data and researchers from different institutions to collaborate in its collection and analysis. Its user community is large (over 200,000 users at peak loads), and with a robust backend, the portal has a secure means of exchanging sensitive information.

Results

A customised, central and secure open-source community portal for the Dutch Twin Registry.

Enhancing the existing workflow
Customised to include questionnaires and reports and ensured alignment with the Biobank's processes.

Ensuring security and scalability
Integrates with backend systems of the Dutch Twin Registry and accommodates a peak load of 200,000 users.

Facilitating usability
Built for multiple user groups, the portal system contains different forms for each client group.