Each year around 350 patients undergo surgery in the Dutch UMC's for pancreatic cancer and 60 patients for chronic pancreatitis (CP).
The most common type of pancreatic cancer is the adenocarcinoma. Each year approximately 2,000 new patients are diagnosed with an adenocarcinoma. Because symptoms often develop late, these patients frequently present in a well advanced stage of the disease. Due to the aggressive behaviour of the adenocarcinoma the average life expectancy after diagnosis is four to six months if no treatment is given. Should a curative resection be performed there is 10 - 20% chance of a life-expectancy of 5 years. However, at presentation, only 20% of patients qualify for a curative resection so that the majority of patients are dependent on the limited possibilities of palliative chemotherapy. Besides adrenocarcinoma there are a few (pre) malignant tumors that indicate a pancreas operation. The prognosis for these patients is much better than by adenocarcinoma.
In the Netherlands there are more than 1,100 new CP patients each year. CP is often a debilitating disorder due to heavy chronic pain. Eventually a large number of patients (40 - 75%) will require surgery. In the group that suffers serious long term pain as a result of CP 80% of the patients experience pain relief after surgery, even years later.
The Netherlands excels in the field of interuniversity clinical research on the pancreas. There are two nationally established clinical research groups, the Dutch Pancreatic Cancer Group (DPCG) and the Pancreatitis Werkgroep Nederland (PWN). Both groups form a strong national multidisciplinary partnership in the field of pancreas tumours and pancreatitis and maintain a close relationship with the patient society Living With Hope Foundation (LWHF) for Pancreas Cancer and the Alvleeskliervereniging for Pancreatitis.
The goal of the Pearl is to collect pancreatic tissue and blood by each elective pancreas operation in the eight UMC’s (regardless of the indication) for the purpose of scientific research on the pancreas, periampullary tumours and chronic pancreatitis.
For the DPCG is the development of personalized cancer care the principle motivation for collaborating in the Pancreatic cancer and pancreatitis Pearl. The PWN aims to predict the course of CP and the timing of intervention with the help of clinical, radiological and morphological data and genetic profiling.