Improved infrastructure at the PKU biobank for enabling future innovations and medical research

Important results from the project

The purpose was to enable innovations and large research projects through a more efficient and faster information acquisition from the PKU biobank. We have fullfilled this purpose. Projects that previously had to spend enormous amounts of time searching for sample information in physical archives can now retrieve the same data through a simple database search. The goal was to transfer data from three million paper referrals for PKU tests into a digitally searchable format. We have so far digitized approximately 1.5 million referrals, so there is still work to be done.

Expected long term effects

We have so far digitized all referrals for PKU tests back to July 1991. This means that all test data for children born after this date are now searchable in a database. This has led to more efficient resource utilization and that we have been able to handle more requests for samples for primarily research. We currently have four active research projects, all with good progress, which would not have been possible without digitally searchable sample information. Out of these four, only one project still needs to look up sample information manually.

Approach and implementation

We began with an establishment phase where we developed working methods and set up the environment for transferring data from paper to a digitally searchable format. This phase was completed July 30th, 2020. In the implementation phase, paper referrals are scanned into a preliminary system where they are reviewed manually and the data is transferred to digital format. The image and associated data are then transferred to an existing system where the data is searchable both via an interface and via database searches. Before the data is finalized, a series of quality checks are carried out.