The Pancreas Registry and Biobank established by the Hungarian Pancreatic Study Group aims to understand the development and treatment of pancreatic diseases and serves as a database for genetic studies. The disease group includes acute and chronic pancreatitis, as well as pancreatic cancer. Clinical data are recorded in the registry, and whole blood samples have been placed in the biobank for research purposes.
Chronic pancreatitis (CP) is the chronic inflammation of the pancreas that causes progressive and permanent organ damage. The annual incidence of chronic pancreatitis is 2 to 23 per 100,000 persons. Its prevalence is still increasing, which is mostly attributed to lifestyle factors like alcohol abuse or smoking. Although the disease is mostly treated in outpatient care, there are several patients requiring urgent hospital admission. Because of the complex pathogenesis and the severe clinical course, chronic pancreatitis imposes a great burden on healthcare and society.
Chronic Pancreatitis in 2020
• CP represents a disease continuum. Improved non-invasive and endoscopic imaging enabled better recognition of incipient morphological and functional changes in the pancreas, but validated criteria for diagnosing early-stage CP are still lacking.
• Chronic pancreatitis has a significant impact on patients’ life. In most cases, the main symptoms are pain, digestive disorders and weight loss, which significantly worsen quality of life. Current management of CP is limited to the symptomatic treatment of its clinical manifestations, evidence-based therapeutic approaches are still missing.
• The discovery that hereditary pancreatitis is caused by a mutation in the cationic trypsinogen gene (PRSS1) in 1996 provided a conceptual breakthrough. Since then, several other genes have been implicated that predispose to CP. In spite of the evidence, genetic testing is not performed in many parts of the world.
Future challenges and opportunities
• By using the approach of translational medicine, animal model discoveries of the pathogenesis should be translated into curative or preventive interventions.
• A standard follow-up management should be developed to identify the complications in time.
• Simpler, less-invasive screening tools should be developed to measure acinar and ductal cell function from biological specimens that are easily obtainable such as urine or blood.
• Evidence-based lifestyle recommendations should be made.
The CP registry has been set up to collect data regarding current practices of diagnosis and treatment and to carry out genetic analysis to discover new predisposing genetic mutations. Since it is a chronic disease, it is crucial to follow-up patients and involve them in clinical trials in order to gain an insight into (1) disease progression, (2) its influence on quality of life and (3) the effectiveness of available therapies.