DBAR Clinical Trials
The purpose of this study is to maintain a comprehensive registry of patients with the rare inherited bone marrow failure syndrome Diamond Blackfan anemia (DBA). The objective of this study is to expand and update the DBAR in order to:
1. Facilitate investigations into the epidemiology and biology of Diamond Blackfan anemia;
2. Provide an accurate phenotype of DBA patients to facilitate genotype- phenotype correlations;
3. Provide access of well characterized patients to treatment protocols;
4. Provide patients to access to research studies;
5. Provide patients with results of research studies;
6. Serve as a resource to patients and their doctors to guide diagnostic, therapeutic, and reproductive decisions.