IKNL

IKNL is an independent knowledge institute focused on oncological and palliative care. Its mission is to reduce the impact of cancer in the Netherlands. More information can be found at: About IKNL.

SHM uses IKNL data because people with HIV have an increased risk of certain types of cancer. These cancers are often diagnosed in clinics other than HIV treatment centers. The Netherlands Cancer Registry (NKR) database of IKNL provides access to this information, which helps SHM investigate cancer diagnoses, cancer stages, and treatment outcomes for people with HIV, and compare them to the general population.

SHM submits research proposals via the IKNL application form. These proposals are guided by IKNL staff and must be approved by the Supervisory Committee and the Scientific Committee of IKNL.

After approval, SHM can upload pseudonymized data to the secure project environment of IKNL, enabling IKNL to make the appropriate data available for SHM research. Data linkage is performed based on a random study number and personal data available at SHM (2 initials, gender, date of birth, 4 digits of the postal code, and patient registration number), with potentially additional information such as the tumor diagnosis date for better matching. IKNL then provides the NKR data, linked to the random study number, including only age at diagnosis as personal information, and deletes the SHM linkage file. SHM researchers can download the NKR dataset via two-factor authentication and store the data, unlinked to the SHM data, within the secure environment of Amsterdam UMC. The NKR dataset is available for five years and will be deleted within this period.