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Canadian Inherited Marrow Failure Registry

What we do

Objectives of the Registry

  1. To determine the prevalence of the various inherited bone marrow failure syndromes in Canada.
  2. To characterize the phenotype (medical problems) of the various inherited bone marrow failure syndromes.
  3. To determine the age specific and annual incidence of severe aplastic anemia/myelodysplasia/acute leukemia/solid tumours in the patients and their relatives.
  4. To identify risk factors for the development of severe aplastic anemia/myelodysplasia/acute leukemia/solid tumours.
  5. To provide genetic and cellular testing to establish a diagnosis and correlation between the genotype (genetic defect) and the phenotype.
  6. To gather information on the use of various therapeutic modalities (e.g. transfusion, cytokines, androgens, hematopoietic stem cell transplantation).
  7. To create a blood and marrow sample bank for future research related to inherited marrow failure syndromes.