Italian Regional Network for Myelodysplastic Syndromes MDS Patient Registry Collecting Adult Patient Data for Research and International Collaboration

What this Trial Is About

Researchers are collecting epidemiological data on adults newly diagnosed with myelodysplastic syndrome MDS through a regional network of registries in Italy. The study aims to use a standardized electronic case report form to gather and anonymously share data across regions and with other international MDS registries. This observational study helps better understand the incidence, prevalence, and progression of MDS over time. Participants are adults diagnosed with MDS who consent to share their medical data. The study does not involve any treatment or intervention but focuses on data collection and monitoring through regional registries. The network facilitates aggregation and analysis of anonymous epidemiological information to support research and improve knowledge on MDS. During the study, researchers will track key outcomes over six years, including new MDS diagnoses, response rates, prevalence, overall survival, progression-free survival, and progression to acute myeloid leukemia AML. Participants information will be collected and stored securely without altering standard medical care. The study is expected to continue until May 2032, with ongoing data collection and long-term follow-up.

Italian Network MDS Registry