First time linking Hartwig Medical Database with the Netherlands Cancer Registry for AYA Patients
This July, the first data transfer was completed between the Netherlands Cancer Registry (NKR) and the Hartwig Medical Database for over 400 AYA patients participating in the GENAYA project. This further enriches the database with clinical data and enables further research.
In the Hartwig Medical Database, Hartwig Medical Foundation holds the genomic data of over 7,000 patients, including more than 500 people aged 18 to 39, also known as Adolescents and Young Adults (AYAs). To enable further research on this patient group, it is essential to link the genomic data to clinical data, including details about diagnosis, treatment, and treatment outcome.
The Netherlands Cancer Registry (NKR) is managed by IKNL and contains data on the diagnosis and treatment of all cancer patients in the Netherlands. A national team working in all hospitals in the Netherlands records this information for all patients in the same way, allowing for easy comparison with other patients.
To enable further research on this patient group, it is essential that the genomic data be linked to clinical data, including details about diagnosis, treatment, and treatment outcome.
Together with IKNL, Hartwig has launched a project to link genomic data from AYA patients in the Hartwig Medical Database with data from the Netherlands Cancer Registry. This project will improve the comparison of the tumor DNA of these young patients with clinical data. This requires data to be linked securely without exposing personal information such as name and date of birth to users. Hartwig hopes to implement this link for the remaining samples in our database soon.
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