The Dutch Pancreatic Cancer Project Optimization of clinical research in pancreatic cancer

The Dutch Pancreatic Cancer Project (PACAP) has one goal: to improve the outcomes and quality of life of pancreatic cancer patients. PACAP is one of the largest national collaborations for the collection of clinical outcomes and biomaterials.
It is estimated that by 2030, pancreatic cancer will be the second most common cause of cancer-related death in Europe. Without treatment, median survival of pancreatic cancer patients is only several months. The Dutch Pancreatic Cancer Group (DPCG, www.dpcg.nl) is the national multidisciplinary tumor working group for pancreatic cancer patients. Members include gastro-intestinal surgeons, gastroenterologists, medical oncologists, radiologists, pathologists, radiotherapists, dieticians, nurses and patient representatives. Within the DPCG, PACAP also functions as a platform to discuss all data, initiate translational research, initiate improvements, and develop strategies to test these improvements in clinical trials. All this is realized in a nationwide, multidisciplinary approach with strong patients’ involvement.
In the Dutch Pancreatic Cancer Audit (DPCA) each patient undergoing pancreatic operation for pancreatic cancer is registered. The DPCA has been expanded with a registration for patients who cannot undergo surgery. All patients with pancreatic cancer are invited for a three-monthly, online questionnaire of patient-reported outcomes (‘quality of life’). The thesis also describes the first international collaborations of PACAP, and investigates several ‘hot topics’ within pancreatic cancer which may find their implementation within PACAP.
PACAP provides the need for nationwide information on pancreatic cancer patients. The combination of a registration of treatment, quality of life and biomaterials on a nationwide scale provides information which will benefit many researchers, patients and other organizations in future.