Creation of a European mantle cell lymphoma registry

Mantle cell lymphoma (MCL) is a rare form of B-cell lymphoma. It usually takes an aggressive course with an unfavorable prognosis. In recent years the therapy options have improved thanks to new active substances, but many questions surrounding ways in which the prognosis of patients with MCL can be improved remain unanswered, particularly for patients with recurrent disease.

As MCL is so rare, progress in research is only possible through international cooperation. The European Mantle Cell Lymphoma Network (EMCL) is active in Europe, bringing together experts in clinical practice, pathology, epidemiology, statistics and basic research. Researchers from Switzerland are also involved in the EMCL.

The EMCL now wants to set up a registry to collate data on the diagnosis, therapy and course of at least 900 European patients with MCL, at least 185 of them from Switzerland. The registry will record information such as the initial diagnosis, type and number of therapies, duration of therapies, response to therapy, recurrences and the further course of the disease – all things that are recorded during the patient’s routine management. In addition, a biobank with the patients’ biological material is being built up that will be made available to research. Among other things, blood samples will be collected and stored here.

The registry data will be used to investigate unanswered questions and gaps in current knowledge of MCL. The registry’s initiators hope that new findings derived from the registry will improve the treatment of patients with MCL.

In Switzerland SAKK is responsible for funding and setting up the registry and for obtaining approvals and clarifying issues with the Ethics Committee. SAKK is also the contact for individual institutions and researchers who record patient data in the MCL registry.

For further information go to: www.emcl-register.net