FDA Patient Preferences Study

We are surveying individuals with sickle cell disease (SCD) and/or parents of a child with SCD to get a sense of the types of treatment they would choose based on the harms and benefits of those treatment options. The proposed study will be designed to meet the following objectives: 1) Elicit individual respondent's maximum acceptable risk (MAR) for treatment benefits 2) Elicit individual respondent's minimum 3) Characterize heterogeneity in MARs and MABs among respondents