German Clinical Trials Register

Acronym/abbreviation of the study

GLA registry

URL of the study

https://www.german-lymphoma-alliance.de/website-register.html

Brief summary in lay language

Clinical studies can often only depict certain aspects of the reality of care. In particular, rare constellations and underrepresented patient groups or patients with co-morbidities are often underrepresented in these studies. The collection of "real-world data" is therefore an essential additional instrument for drawing conclusions about the course of treatment, prognosis and unmet medical needs from everyday data. The GLA registry has set itself the task of establishing, operating and analysing "real-world data" for various lymphoma diseases. This involves integrating data from existing registries as well as creating opportunities to enter new data in a harmonised process. The existing registries have joined forces under the umbrella of the GLA-R in order to grow into a joint scientific exchange platform.

Brief summary in scientific language

Major improvements of biological understanding and classification of malignant lymphomas has been made over the last decades. This has resulted in a continuous fragmentation of disease entities with increasingly smaller samples sizes, which in turn limits the chance to study all entities prospectively in distinct trials. At the same time, a substantial number of therapeutic improvements were established based on controlled clinical trials. The full impact on routine care, however, can hardly be detected within these studies. These limitations highlight the importance of real world data, which in part can compensate for the lack of knowledge, which exists if only controlled trials in distinct therapeutic scenarios are considered. Currently, several lymphoma registries are already implemented in Germany focusing on distinct entities (e.g. follicular lymphoma or mantle cell lymphoma), using different documentation formats and platforms, requiring different informed consent forms and have redundant administrative and supportive structures. It is of great importance to secure the data which already have been obtained on the one hand, but develop a common platform, which allows to significantly reduce workload, expanses and required structures. To accomplish this unification (on one platform or an established exchange format) is a central part of the GLA-R.