Patientenbeteiligung im CML-Studiennetzwerk

Chronic myeloid leukemia (CML) is a model disease for the treatment of neoplastic diseases on the basis of molecular genetic findings. The advent of tyrosine kinase inhibitors has dramatically improved patients’ outcome, with 8‑year survival rates of up to 95%. In Germany, around 1000–1200 new patients are diagnosed annually, and the prevalence is increasing. The European LeukemiaNet has defined milestones for the further optimization of therapy; if these are not reached, a change in treatment is recommended. In addition to optimal survival, the main treatment goals for CML are an optimal quality of life and achievement of treatment-free remission. The German CML Alliance plays a central role in networking doctors, study staff, and patients, in order to ensure the best possible treatment regardless of location. Since its foundation in 2014, the CML Alliance has promoted the exchange of information on clinical trials and cooperates with the patient-run platform “Leukaemie-online,” which offers moderated forums, workshops, seminars, and an extensive knowledge database. Patient involvement is an essential component of the CML study network. Patient representatives are actively involved in the design and implementation of studies, contribute to the optimized design of information sheets, and are involved in the definition of study objectives. Internationally, the global patient self-help organization “CML Advocates Network” is committed to the worldwide exchange of best practices and the improvement of patient care. Patient participation in CML research fulfills the defined requirements for good participation and has significantly improved the quality of life and treatment options of those affected through close cooperation.