Myelodysplastic Syndromes (MDS) in Canada: A national prospective study of the epidemiology, quality of life and impact of co-morbidity/frailty on disease outcome

Myelodysplastic syndromes (MDS) comprise a spectrum of bone marrow disorders primarily seen in the elderly. Patients with MDS often present with reduced blood counts resulting in fatigue, shortness of breath, a need for red blood cells transfusions and increased infections. Roughly 1/3 of patients with MDS develop acute myeloid leukemia and all MDS patients experience shortened survival do to their disease. In the last 5 years, new therapies are emerging for the management of this disease. Many of these therapies are expensive and their benefits with respect to quality of life are unknown. Additionally, the distribution of MDS across Canada may vary based on the ethnic diversity and as a result, forecasting disease burden and resource utilization is difficult at the provincial and national level. This study proposes to create a national registry of MDS patients to determine MDS epidemiology in Canada, treatment availability and the impact that these treatments have on quality of life. In addition, this study will for the first time assess comorbidity/frailty as a risk factor for survival and the ability to tolerate therapies. This may permit for more judicious use of limited health care resources in appropriate patients