Study Detail

Study ID 1027
Name Comprehensive Sickle Cell Centers' (CSCC) -Priapism
Contact Email
Acronym CSCC-Priapism
Period 2005 -2008
Design Observational cohort study
Study PI Zora Rogers
Institution RTI International
Funding Agency NHLBI
Overview Priapism, a prolonged erection of the penis that may lead to impotence, is a specific type of painful crisis that commonly occurs in patients with sickle cell disease. The current treatment of priapism can be improved by comparing therapeutic strategies in prospective clinical trials, but first an assessment of the natural history of priapism is needed. This project will conduct an interview of 1,650 males with sickle cell disease in order to determine in which patients, how often, and under what circumstances priapism occurs.
Focus Areas 1. Enumerate the cross-sectional prevalence, demographics, and common clinical characteristics of priapism in males with sickle cell disease among the CSCC patient population.
2. Identify patients eligible for randomized clinical trials of promising secondary prevention strategies.
Outcomes 1. Enumeration of the prevalence of priapism in males with sickle cell anemia and sickle beta zero thalassemia.
2. Characterization of priapism in males with sickle cell anemia with reference to time of onset, duration of events, frequency of episodes, precipitating or associated activities, treatment modalities used, and outcome of treatments.
3. Descriptive comparison of the prevalence of priapism in males with sickle cell anemia to that described in older patients with other sickle hemoglobinopathies.
4. Assessment of general patient and parent understanding of priapism as a complication of sickle cell disease gained from completion of protocol.
5. Enumeration of patients available for clinical trials of secondary prevention.
Data Location RTI International
Biospecimen Available N/A
Data Consent Consent includes Certificate of Confidentiality; consent includes statement regarding data deidentification.
Biospecimen Consent No sample
Contact Consent Yes, with permission on consent
Genomic Data No
Age Range 5-99
No. Participants 1464
Inclusion Criteria 1. Diagnosis of sickle cell anemia or sickle beta zero thalassemia, if 5 years of age or over OR
2. Diagnosis of sickle beta plus thalassemia or sickle hemoglobin C disease, if 15 years of age or over
3. Participant and/or parent or guardian must be able to communicate adequately with the interviewer
4. May participate if currently taking hydroxyurea, undergoing chronic transfusion, or participating in other research studies, including those involving treatments such as arginine, if all other inclusion criteria are met
Exclusion Criteria 1. Patient or parent/guardian declines participation.
2. Female.
3. Subject or parent/guardian unable to communicate adequately with the interviewer.
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