German Marginal Zone Lymphoma Register of the GLA e.V.
Marginal zone lymphoma belongs to the group of so-called non-Hodgkin's lymphomas. It is very rare and can occur in various forms: a distinction is made between marginal zone lymphomas that predominantly affect the lymph nodes, those that mainly colonise the spleen or those that are predominantly found in the mucous membranes. The rarity of the disease and the different colonisation patterns of marginal zone lymphoma sometimes lead to uncertainty as to the form in which this lymphoma should be diagnosed and treated. Furthermore, larger clinical studies are lacking for the majority of marginal zone lymphomas, meaning that there is very little data on the epidemiology or adequate treatment of marginal zone lymphoma.
Against this background, there is a considerable need for information and counselling among treating physicians with regard to both diagnosis and therapy. The established German Marginal Zone Lymphoma Register aims to document patients with marginal zone lymphoma and to find out how this disease is diagnosed and treated in Germany. Based on the data obtained, it will be easier to formulate recommendations for optimised diagnosis and treatment in the future. The register can also be used as a counselling platform for doctors and patients who want to find out more about the diagnosis and treatment of this rare lymphoma.
Active centres (as of May 2020):
Currently 93 centres are activated.
Patient inclusion (as of May 2020):
A total of 513 patients are currently registered.
Patient inclusion (as of July 2022)
A total of 700 patients are currently registered.
National Follicular Lymphoma Registry (FL Registry)
Follicular lymphoma (FL) is a malignant disease of the lymphatic organ system and a subtype of non-Hodgkin's lymphoma. Follicular lymphomas account for around 25% of all NHL cases and are therefore one of the most common forms of malignant lymphoma. Follicular lymphoma is usually discovered by chance, as it usually begins with painless enlargement of lymph nodes. One characteristic of FL is that it causes no specific and sometimes only very minor symptoms. A wide variety of therapies are used in everyday clinical practice for FL. Due to the palliative situation of patients and the fact that treatment is only administered in the case of lymphoma-associated symptoms, for example, and the diagnosis of FL does not automatically lead to treatment, diagnosis is also not standardised outside of studies. For these reasons, there is a lack of valid data on diagnosis and treatment in everyday clinical practice. The "National Follicular Lymphoma Register" will prospectively document the diagnosis and treatment of the disease in order to establish an information and counselling platform for doctors and patients. In this way, the FL register will make an important contribution to healthcare research in Germany.
Patient inclusion (as of July 2022)
A total of 705 patients are currently registered.
Currently 77 centres are activated.