MPN-Bioregister

"It is estimated that there are up to 8,000 rare diseases worldwide. These include myeloproliferative neoplasms (MPN) - a group of malignant diseases of the bone marrow in which too many blood cells or platelets are produced. The diseases are chronic and can currently only be cured by a stem cell transplant. The most common forms of MPN include essential thrombocythemia, polycythemia vera, primary myelofibrosis and chronic myeloid leukemia (CML). Every year, around one to four cases per 100,000 inhabitants are newly diagnosed. This may seem low at first glance, but by 2050 the number of cases in Europe will increase 10-fold. This makes research into MPN all the more relevant. An important building block for MPN research is the so-called bioregistry - a database in which clinical data and biomaterial from patients are recorded systematically, in detail and centrally.

One such bioregistry is the GSG-MPN, the German Study Group for Myeloproliferative Neoplasia, which is made up of experts from the University Hospital RWTH Aachen and the University Hospital Ulm. The registry operates throughout Germany; more than 1,500 patients are currently included. Its tasks include basic documentation, an annual follow-up including biobanking of blood and bone marrow samples as well as skin biopsies. The bioregistry allows information to be compiled that provides important insights into the development of the disease and enables therapies to be further optimized and individually tailored - another important step towards personalized cancer medicine.

Thanks to the support of the Stiftung Universitätsmedizin Aachen, the project has been fully funded." (Source: Stiftung Universitätsmedizin Aachen)