Liver Cancer Registry Platform

Liver cancer is a malignant disease of the liver in which cancer cells multiply uncontrollably. The most common form is hepatocellular carcinoma (HCC), which usually develops as a result of pre-existing liver damage such as cirrhosis, chronic hepatitis B, or hepatitis C. Another, rarer type is cholangiocellular carcinoma (CCC), which affects the bile ducts in the liver. Symptoms often do not appear until late in the disease and are nonspecific, such as persistent fatigue and unintentional weight loss. The diagnosis is often made incidentally during routine checkups. In advanced stages, symptoms such as tenderness in the upper abdomen, yellowing of the skin and eyes (jaundice), and an increase in abdominal girth due to fluid accumulation (ascites) may occur. Various treatments are available for liver cancer; however, structured treatment data from clinical practice are currently lacking. Treatment for liver cancer depends on the size of the tumor, the stage of the disease, and the condition of the liver. Possible options include surgery to remove the tumor (resection), a liver transplant, or local procedures such as tumor ablation (e.g., using radiofrequency ablation or percutaneous ethanol injection). In advanced stages, tumor growth can be slowed with medications or specialized procedures. These include targeted therapies, immunotherapies, and treatments in which the tumor is targeted via the blood vessels with chemotherapy (TACE) or radioactive particles (TARE). The treatment of cholangiocellular carcinoma (CCC) also depends on the stage of the disease and the size of the tumor, with surgery (resection) being the only potentially curative therapy. In advanced stages, systemic therapies such as chemotherapy, targeted drugs, and, in certain cases, immunotherapies play a central role, while local procedures such as TACE or TARE are used only in selected situations. If curative or tumor-inhibiting therapy is no longer possible or desired, the “Best Supportive Care” (BSC) principle takes precedence. The goal here is to specifically alleviate symptoms in order to maintain or improve patients’ quality of life.

The goal of the JADE study is to collect data on the disease and treatment pathways for HCC and CCC through a Germany-wide registry platform. This is intended to improve treatment. To this end, patient data is collected both from the start of treatment (prospectively) and from previous records (retrospectively). Over a period of up to three years, the study will collect information on, among other things, the disease, treatments, quality of life, changes in the course of the disease and treatment, and pre-existing conditions. The study is a registry study, meaning it is purely observational. No treatment is prescribed as part of the study.

Women and men aged 18 and older who have liver cancer—specifically HCC or CCC—are eligible to participate in the study. Patients can be enrolled in the study no later than 8 weeks after the start of their first local treatment or their first drug therapy.