Pathology Databanking and Biobanking in The Netherlands, a Central Role for PALGA, the Nationwide Histopathology and Cytopathology Data Network and Archive

Abstract

Since 1991, a nationwide histopathology and cytopathology network and archive is in operation in The Netherlands under the name PALGA, encompassing all sixty-four pathology laboratories in The Netherlands. The overall system comprises decentralized systems at the participating laboratories, a central databank, and a dedicated communication and information exchange tool. Excerpts of all histopathology and cytopathology reports are generated automatically at the participating laboratories and transferred to the central databank. Both the decentralized systems and the central system perform checks on the quality and completeness of excerpts. Currently, about 42 million records on almost 10 million patients are stored in the central databank. Each excerpt contains patient identifiers, including demographic data and the so-called PALGA diagnosis. The latter is structured along five classification axes: topography, morphology, function, procedure, and diseases. All data transfer and communication occurs electronically with encryption of patient and laboratory identifiers. All excerpts are continuously available to all participating pathology laboratories, thus contributing to the quality of daily patient care. In addition, external parties may obtain permission to use data from the PALGA system, either on an ongoing basis or on the basis of a specific permission. Annually, 40 to 60 applications for permission to use PALGA data are submitted. Among external users are the Dutch cancer registry, population-based screening programs for cancer of the uterine cervix and breast cancer in The Netherlands, and individual investigators addressing a range of research questions. Many scientific papers and theses incorporating PALGA data have been published already. In conclusion, the PALGA system is a unique system that requires a minimal effort on the part of the participating laboratories, while providing them a powerful tool in their daily practices.

No evidence for increased prevalence of colorectal carcinoma in 399 Dutch patients with Birt-Hogg-Dubé syndrome

“…Data were collected through PALGA, the nationwide network and registry of histo- and cytopathology in the Netherlands, with nationwide coverage of all academic and non-academic centres since 1991, after approval by their scientific committee. 27 We provided PALGA with pseudonymised patient data based on name, date of birth and gender, via a Trusted Third Party. These were linked to the data in the PALGA database.…”

Incidence and origin of histologically confirmed liver metastases: an explorative case-study of 23,154 patients

“…Data were collected using a search question with keywords in the PALGA-database; the nation-wide network and registry of histo-and cytopathology in the Netherlands. This network registers all pathology reports since 1971, with a nation-wide coverage since 1991 [ 27 ]. With the key words; “liver metastases”, “histology”, and limited to the years “2001-2010”, all pathology reports describing liver metastases were identified.…”

Radioactive Seed Versus Wire-Guided Localization for Ductal Carcinoma in Situ of the Breast: Comparable Resection Margins

“…Since 2009, Dutch pathologists can use synoptic reporting modules to report the pathological test results for several common tumor types, including breast cancer. 19 In these modules, parameters are captured in numerous standardized variables instead of free-text fields, which facilitates the analyses of all reports simultaneously.…”