Australian Myelodysplastic Syndromes (MDS) Patient Registry

Abstract

The primary purpose of this study is to provide long-term patient follow-up, and review of clinical and correlative data outside of clinical trials.

Who is it for? The registry will collect information on patients age 18 years or older, with a new diagnosis of Myelodysplastic syndrome (MDS).

Study details Treating clinicians at sites will identify patients at the time of referral and enrol them to the study. The following categories of data items will be collected to the Myelodysplastic syndrome database using a web portal: • Health at diagnosis • Demographic details • Laboratory and bone marrow biopsy results at diagnosis including cytogenetics and molecular studies if available • Therapy decisions including pharmacological agents, transfusion practice and supportive therapy, and side effects of treatment • Outcomes (overall and progression free survival, duration of response and time to next treatment and quality of life measures – EORTC QLQ-C30, QUALMS) • Long-term outcomes (through linkage with Cancer and Death Registries) Patients are asked to completed both questionnaires 6 monthly up to 3 years either at their hospital appointment or send to them via email.

It is hoped that the data collected for this registry will identify patterns of treatment and variation in outcomes, for survival and quality of life. Findings will be valuable in informing optimal treatment strategies for Myelodysplastic syndrome and will assist with monitoring patient access to care, as well as monitoring trends in Myelodysplastic syndrome incidence and survival in Australia.