Myelodysplastic syndromes (MDS) are a group of haematological disorders that occur primarily in people over the age of 70. There are various guidelines for the diagnosis and treatment of MDS, but it is unknown how well these guidelines are followed in clinical practice and whether there is any resulting benefit for patients.
Around 300 new cases of MDS are diagnosed in Switzerland each year, and approximately 1,600 patients are currently living with MDS. Guidelines have been developed to optimize the diagnosis and treatment of MDS. Corresponding indicators need to be defined to measure the extent to which the guidelines are being followed in day-to-day practice. There are currently no such guideline-based indicators (GBI) for MDS patients. One of the objectives of the SAKK 33/18 trial is to develop GBI for MDS. The GBI will make it possible to evaluate compliance with diagnostic and therapeutic guidelines for MDS patients. In a further step, it will be possible to identify shortcomings in the provision of healthcare for MDS patients and draw up recommendations for improving the standard of care.
SAKK 33/18 is a trial being carried out using data from the Swiss MDS Registry. Numerous Swiss hospitals contribute to this register, which collects data from MDS patients who are treated in Switzerland. Patients must provide written consent before their data can be included in the register. The aim is to add 100-150 patients to the register each year for four years (2019-2023), which would make comprehensive data for 400-600 patients available for the SAKK 33/18 trial.