PALGA

PALGA provides structured pathology data, such as biopsy results and other tissue examinations. This data is essential for making accurate diagnoses and creating treatment plans. More information can be found at: Impact through Insight | Palga.

SHM uses PALGA data because people with HIV have an increased risk of certain types of cancer. It is important to include cancer precursors, such as anal and cervical cancer, in the research. This helps SHM evaluate the effectiveness of screening and gain insights into the tissue characteristics of cancers that may not be registered with IKNL.

Many precursors of malignancies are diagnosed in clinics other than HIV treatment centers, which means SHM often lacks this detailed information.

PALGA manages a linkage table that generates PALGA data for SHM research requests. Using software from ZorgTTP, installed within the HIV treatment centers, an encrypted 16-digit file is created based on a single initial, last name, date of birth, gender, and patient registration number. This file is sent to ZorgTTP under a unique code number. ZorgTTP forwards the unique code number along with a PALGA number to PALGA, enabling the setup of the linkage table for SHM research requests.

SHM research requests are submitted via PALGA’s application procedure. After approval by PALGA advisors, the Privacy Committee, and the Scientific Committee, SHM receives a research number and uploads a file containing the unique SHM code numbers and random study numbers to PALGA's secure environment. PALGA then retrieves the requested data and makes it available under the random study number on its secure server. SHM researchers can download the PALGA dataset without personal data via two-factor authentication and store it, unlinked to SHM data, within the secure environment of Amsterdam UMC. After the research is completed, the PALGA dataset is deleted within five years.