The Diamond Blackfan Anemia Registry (DBAR) team led by Dr. Adrianna Vlachos of Schneider Children’s Hospital and the Daniella Maria Arturi Foundation have been working together to pursue a pure leucine trial for DBA patients in the United States and we are making progress! A formal proposal has been submitted to the Telemedicine & Advanced Technology Research Center (TATRC), a Department of Defense entity run by the US Army Medical Research and Materiel Command. TATRC fosters medical research initiatives that can benefit both the warfighter and the wider civilian population and has expressed a shared interest in understanding the potential impact of leucine in red cell deficiency. TATRC is currently reviewing our proposal to conduct a Leucine Trial with the DBA population to better understand the potential implications.
We are anticipating review of the formal proposal and decision for funding soon. Several hospitals around the country have expressed interest in working to identify qualified DBA patients that may be interested in participating in this study and will be listed if we are notified that the formal Leucine Trial proposal has been accepted!