The Palga database contains (molecular) pathology data. Certain research may require combining this data with information from other sources. If this is the case, a link between the Palga database and another data source can be created. The researcher can then merge these two datasets using a shared key.
Procedure for linking datasets
Palga’s database does not contain patient-identifying data, but pseudonyms derived from patient data. If you want to link your own cohort or a cohort from another data source to the Palga database, this data will have to be pseudonymised as well. This is done by ZorgTTP, a Trusted Third Party.
Requests for links can be submitted via the Palga portal. There, under the heading ‘Link’, you can indicate that you want to create a link and specify the registry or study. Linking a cohort based on patient data (such as name and address) requires patient consent in most cases. A blank informed consent form and the patient information leaflet should be attached to the request. If informed consent has not been obtained, please explain why this is the case. More information on patient data links can be found here, in the Code of Good Conduct on Coreon’s website.
Links are also submitted to and reviewed by Palga’s Scientific Council and Privacy Committee. This is not a substitute for assessment by an ethical review committee. For studies that require assessment by an ethical review committee under the WMO, an approval statement must be included in the request.
Links with registries
To create a link between the Palga database and another registry, requests should be submitted to both organisations. Below are a number of registries/biobanks that the Palga database has previously been linked with. Of course, we can also create links with other data sources. Contact our data request consultants to discuss the possibilities.