A Message from Ellen, DBA Nurse
We need to find out how many are interested in the leucine trial so we can report back to the reviewers for funding. It is a slow process but we are about 3/4 of the way there. It already passed the pre- approval, proposal internal review, and proposal external review. Once it is approved, we can put it through our Institutional Review Board (IRB) and have doctors from other sites submit a letter of collaboration so their patients can enroll.
Our total enrollment will be 50 DBA transfused patients over the age of 2, willing to take the leucine powder mixed in food 3 times a day, and have periodic leucine levels drawn (hopefully timed around transfusions).
Please contact Ellen directly at the contact information provided below:
Ellen Muir, RN, CNS, CPON
Diamond Blackfan Anemia
Surveillance and Awareness Program
718-470-3605 / 1-877-DBA-NURSE