Thank you for visiting the Diamond Blackfan Anemia Registry website. This is a difficult time for all of us but we are in this together and we will get through it together. There are no data available regarding COVID-19 infection in patients with DBA. However, the DBAR has added a Frequently Asked Questions (FAQ) section with questions and answers about the novel coronavirus COVID-19 and how patients with DBA may be affected. If you or your child have DBA and have been diagnosed with COVID-19 please help us learn more. Please complete our COVID-19 questionnaire and either scan/email it to us or call us at (888) 884-3227.
Prior to the pandemic, the DBA Registry was in the midst of our annual update. Update questionnaires are being mailed out to all DBAR participants. If you have not received your questionnaire within the next week please. call us as we may not have your most current address. Please take the time to complete the update form and return it to the DBAR. Our research center is closed due to COVID-19, but we are all working remotely and want to answer your calls. We are coming in every week to get the mail and love to see the updates from everyone.
Our two clinical trials – one for sotatercept and the other for trifluoperazine – are suspended to accrual due to the COVID-19 pandemic but will both reopen as soon as possible. If you are interested, please call or email us and we can send you the consents to review. We are submitting a manuscript describing the results of the Leucine Trial and based upon these results we are planning a second trial as soon as we are able; so watch for that!
Thank you and please be safe and stay healthy.
Your DBAR Team