A European Registry for Mantle Cell Lymphomas

Mantle cell lymphoma (MCL) is a rare form of lymphoma in which certain white blood cells, known as B cells, undergo malignant changes. MCL is classified as a non-Hodgkin lymphoma. Overall, the disease has a poor prognosis. MCL is usually detected through enlarged lymph nodes, an enlarged spleen, nonspecific symptoms such as fatigue and weakness, or an elevated number of lymphocytes in the blood. In addition to the lymph nodes, the cancer cells can also occur in the bone marrow and, for example, in the intestines. The causes of MCL are largely unknown, but genetic changes play a role.

Treatment is necessary when patients develop symptoms or when a previously diagnosed MCL is progressing. The treatment depends on the patient’s age and physical condition. Standard treatments include chemotherapy, immunotherapy, and, under certain conditions, a stem cell transplant. In some patients, however, the disease returns after treatment (recurrence) or no longer responds to treatment (refractory). A more comprehensive understanding of the disease has already led to improvements in treatment. Nevertheless, those affected often develop refractory disease and die as a result of MCL. A better understanding of mantle cell lymphoma can help further improve treatment options and could thus extend life expectancy.

The goal of the EMCL Registry Study is to establish a European registry for patients with MCL. The research data collected will be used to further advance medical care. To this end, all patients participating in the study will be included in the registry. This registry collects various types of information, such as the extent of the disease, the presence of risk factors, response to treatment, and disease progression. No new treatments are being tested as part of the study. Data will be collected both from the past (retrospectively) and from the time of enrollment in the study (prospectively).

Women and men aged 18 and older with mantle cell lymphoma (MCL) are eligible to participate in the study. Patients can participate regardless of the stage of their disease or the treatments they have received so far.