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Trial details

Management of National MDS Clinical Database and Local Tissue Bank

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Trial short name: MDS Database

Official title: Management of National MDS Clinical Database and Local Tissue Bank

Principal Investigator: Dr. Rena Buckstein & Dr. Richard Wells

Cancer type: Blood Related
Cancer location: Myelodysplastic Syndromes
Disease stage: Other
Trial phase: Other
Intervention: Other: Database, Other: Biobank

Registration #: NCT02537990

Trial description:
This is an observational study that seeks to better understand the quality of life experience, factors, and changes in patients with myelodysplastic syndrome (MDS). Patients will follow their doctor’s choice of treatment and will be seen by study staff every 4-6 months. Patients will also contribute to a tissue bank through the study storing bone marrow specimens.

Inclusion Criteria: • Diagnosis of a Myelodysplastic syndrome • Diagnosis of CMML-1/CMML-2 • Diagnosis of MDS/MPN • Diagnosis of low blast AML (blasts 20-30%) as defined by the WHO classification (Vardiman, 2002) • 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. Exclusion Criteria: • Subjects with AML and bone marrow blast of 30% or more