German MPN Registry and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasms of the German MPN Study Group

Myeloproliferative neoplasms (MPN) are a group of chronic blood cancers in which the bone marrow produces too many mature blood cells. The MPN group includes, among others, polycythemia vera, essential thrombocythemia, primary myelofibrosis, and chronic eosinophilic leukemia. These diseases can result from various genetic changes (mutations). Chronic myeloid leukemia is also classified as an MPN and is characterized by the BCR-ABL1 mutation (Philadelphia chromosome). Symptoms of MPN include fatigue, night sweats, weight loss, thrombosis, bleeding, and an enlarged spleen. Treatment depends, among other factors, on the type and stage of the disease. Given the rarity of these diseases, it is crucial for gaining new insights to further standardize and centralize the documentation of cases across treatment centers.

The goal of this registry study is to improve the care and quality of life for patients with MPN through uniform, centrally consolidated documentation of these rare diseases across Germany. To this end, clinical data (symptoms, laboratory parameters, treatment courses, etc.) will be collected, biomaterials (e.g., blood and urine samples) will be gathered, and quality of life will be documented using questionnaires. Follow-up examinations are generally conducted once a year as part of the registry, and the total duration of the registry study is 25 years. Participation in the study does not involve testing any new experimental forms of therapy.

Women and men aged 18 and older with BCR-ABL1-negative MPN are eligible to participate in this study.