Thank you for participating in the Diamond-Blackfan Anemia Syndrome (DBAS) Patient & Caregiver Experience Survey.
Purpose of the Survey
Once completed, we believe this will be one of the most comprehensive, real-world assessments from the DBAS community and will empower your voice to improve the treatment landscape.
Your responses will provide regulators, researchers and other interested parties with a personalized and unfiltered understanding of the critical need to find a cure along with improved treatments for DBAS.
Your responses to this survey will support future research, expedite the development of new and better treatments, and inform regulatory decision-making. This survey is anonymous and voluntary. It offers the DBA community a unique opportunity and forum to help researchers and decision makers understand the complications and challenges of living with DBAS and the urgent need for a cure alongside new and improved treatments.
For families that have multiple family members diagnosed with DBAS we ask you to complete a separate survey for each DBAS person.
Estimated time to complete survey: 20–30 minutes
There are 9 sections. Please answer all questions truthfully and to the best of your ability. Thank you.
All survey data and its analysis will be anonymized. All or portions of this survey may be shared with interested medical and research parties for the purpose of understanding the natural history of DBAS and improving DBAS treatments. Portions of this survey may be shared with the U.S.
Food & Drug Administration (FDA) as part of the Patient-Focused Drug Development (PFDD) Initiative and shared during the EL-PFDD meeting organized by the Styrke Foundation for Rare Disease Research and Treatment on May 1, 2026 at 11am EST.
Note to respondents: If a DBAS patient is in hospice or has passed away, please respond to questions in the present tense. Thank you.