The eight Dutch university medical centres provide the vast majority of the country’s tertiary care, and treat almost all patients who have very specific or relatively rare diseases. This puts the centres in a unique position to combine clinical information and biomaterials concerning these patients and to achieve almost total population coverage. The Parelsnoer Institute is a shared infrastructure to collect and access patient data and biomaterials related to specific diseases.
Each of the centres governs a joint database and biobank for all patients with a specific diagnosis, using uniform definitions and storage conditions. The following cohorts are included: inflammatory bowel disease, rheumatoid arthritis, stroke, hereditary bowel cancer, leukaemia, dementia, renal failure and congenital heart diseases. In the future, activities will be expanded to include other conditions.
The AMC participates in most cohorts, and has so far (early 2015) contributed more than 30,000 biological samples from over 1,600 patients. AMC investigators coordinate the ‘pearls’ inflammatory bowel disease, congenital heart diseases and pancreatic cancer.