MDS-CAN: A prospective national MDS clinical database

Purpose of Trial

Myelodysplastic Syndromes (MDS) are rare bone marrow diseases that result in bone marrow failure.  Many patients experience low blood counts, an increase in frequency of infections and or bleeding and some become dependent on transfusions of blood and/or platelets.  The scientific discoveries about what causes the disease are promising and new therapies are being tested to improve medical outcomes. However, the impact of the disease course on quality of life and the impact of patient characteristics (like other health problems, disability, frailty) on health outcomes are not as well tested and are of considerable interest to the investigators of this study. The purpose of this study is to learn more about the quality of life of patients with MDS through questionnaires, fitness tests, and other metrics. 

Eligibility

Key Inclusion Criteria:

• New diagnosis of a Myelodysplastic syndrome confirmed with a diagnostic bone marrow preferably within 1 preceding year
• Greater than 18 years of age at the time of diagnosis
• Able to read, write and speak English or French (non-English or French speaking patients may participate if appropriate translation is used)
• Able to consent

Key Exclusion Criteria:

• Patients whose diagnostic bone marrow exceeds 2 years prior to signing consent
• Patients with AML and blast of 31% and higher, at the time of signing consent
• Prior allogeneic stem cell transplant