Purpose of reviewRegistries provide ‘real world’ perspectives on the natural history and outcomes for many clinical conditions. The purpose of this review is to identify registries for nonmalignant hematological disease and to describe the operation of a successful long-term registry for patients wi

Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry.

Hereditary hemolytic anemias (HHAs) comprise a heterogeneous group of anemias caused by mutations in genes coding the globins, red blood cell (RBC) membrane proteins, and RBC enzymes. Congenital dyserythropoietic anemias (CDAs) are rare disorders of erythropoiesis characterized by binucleated and multinucleated erythroblasts in bone marrow. CDAs typically present with a hemolytic phenotype, as the produced RBCs have structural defects and decreased survival and should be considered in the differential of HHAs. This article discusses the clinical presentation, laboratory findings, and management considerations for rare HHAs arising from unstable hemoglobins, RBC hydration defects, the less common RBC enzymopathies, and CDAs.

Rare Hereditary Hemolytic Anemias: Diagnostic Approach and Considerations in Management.

The First Registry for Patients with Congenital Dyserythropoietic Anemia in North America: Design and Preliminary Results

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The First Registry for Patients with Congenital Dyserythropoietic Anemia in North America: Design and Preliminary Results