Trial Information

The Epidemiology of Priapism (Sickle Cell Disease)

Priapism is a prolonged, painful erection of the penis that lasts for more than four hours
and occurs without sexual stimulation. It occurs when blood in the penis becomes trapped and
is unable to drain properly. If it is not treated immediately, it can lead to scarring and
permanent erectile dysfunction. Many cases of priapism are the result of sickle cell
disease; approximately 42% of all adults with sickle cell disease will eventually develop
priapism. Current treatments include medication, ice packs, or surgery. More research is
needed to better understand the demographic and clinical characteristics of priapism. The
purpose of this study is to collect information and further characterize priapism by
conducting interviews with men with sickle cell disease. In turn, these findings may guide
future priapism clinical trials.

This study will consist of two standardized questionnaires that will be administered to
1,650 men with sickle cell disease. Participants will complete an initial five-item
questionnaire about priapism. If a participant indicates past experience with priapism on
this initial questionnaire, he will be asked to complete a second questionnaire. This
questionnaire will ask in-depth questions to further characterize the participant's episodes
of priapism. If health issues such as drug use, harmful sexual behaviors, or impotence are
identified upon reviewing the questionnaire, clinic staff will suggest care options and
provide appropriate referrals to the participants. All participants will receive an
educational brochure about priapism and compensation for completing the questionnaires.