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Work package 1: management

A poster was presented at the SLLS conference in Amsterdam and at the BBMRI ‘Hands on: biobanks’ meeting in The Hague in 2013, explaining the purpose and activities of Biolink NL.

- View poster (Van Grootheest et al., 2013).

Biolink NL meeting June 2013: download documents.

Biolink NL meeting March 2014: download documents.

Biolink NL symposium September 2015: ‘Gegevenskoppeling in Nederland’: download presentations.

Work package 2: inventarisation and catalogue.

We queried Dutch biobanks about their experience with linkage, their wish to use record linkage to enrich their data collections in the future, and the technical and legal possibilities to do so.

  1. -Biolink-NL inventarisatie (Nederlands) (De Groot et al., 2014).

We have built a catalogue demonstrating the possibility to link different data sources together on subject (patient) level. Every patient within the catalogue is represented with a unique identifier, regardless of the number of sources in which the patient was found. Therefore it is possible to query over multiple sources. An important characteristic of the catalogue is that the data of multiple sources are stored in a well-defined, uniform format. The catalogue contains heterogeneous data, making the catalogue very rich. However, the underlying registries decide which variables are uploaded into the catalogue; some sources provided more or more detailed variables than others. Obviously, the availability and precision of the provided variables determine the possibilities for querying the catalogue. In this document we provide a number of examples of catalogue queries.

If you as a researcher are interested in querying the overlap between any of these data sources, please contact prof. dr. Olaf Klungel and submit your request (O.H.Klungel@uu.nl).

A more detailed description of the catalogue and several example queries can be downloaded here:

  1. - Biolink-NL catalogue (Visser et al., 2015).

Work package 3 and 4: record linkage methods and demonstration projects

We conducted a literature review and a simulation study on record linkage. Preliminary results were presented at the Scottish Health Informatics Programme meeting in St. Andrews, August 2013 (download presentation in Dutch). Results from this simulation and review were published as a freely accessible white paper in collaboration with Statistics Netherlands.

  1. -Record linkage in health data: a simulation study (Ariel et al., 2014).

In a second paper we described the methods and the results of the demonstration projects that were conducted as part of Biolink NL. This paper was published as an open access paper by Statistics Netherlands.

  1. -Record linkage for health studies: three demonstration projects (Van Grootheest et al., 2015).

Biolink NL researchers at the Netherlands Cancer Institute have constructed two research cohorts solely based on record linkage of several data sources. The methods and experiences are described in the following paper.

  1. -Using record linkage to create a population-based cancer patient cohort with multiple disease outcomes (Boekel et al., 2015).

Work package 5: ethical, legal and social issues.

A wiki was made for BBMRI that focusses on the legal aspects of biobanking in the Netherlands. This wiki is regularly being updated.

- Legal WIKI website.

A code of conduct for the linkage of health data has been developed by our attorney J.A. Bovenberg. A number of discussion meetings were held with members of the review boards of several registries and hospitals in the Netherlands.

- Koppelcode Gezondheidsgegevens (Bovenberg, 2015).