Priapism in Boys and Men With Sickle Cell Disease - Demographics, Characteristics and Prevalence



Status:Completed
Conditions:Anemia
Therapuetic Areas:Hematology
Healthy:No
Age Range:5 - Any
Updated:2/3/2019
Start Date:August 2005
End Date:March 2008

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The Epidemiology of Priapism (Sickle Cell Disease)

Priapism, a prolonged erection of the penis, is a medical issue that often affects men with
sickle cell disease. The purpose of this study is to collect demographic and clinical
information on priapism by interviewing men with 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.

Inclusion Criteria:

- Diagnosis of sickle cell anemia or sickle beta zero thalassemia, if 5 years of age or
over OR

- Diagnosis of sickle beta plus thalassemia or sickle hemoglobin C disease, if 15 years
of age or over

- Participant and/or parent or guardian must be able to communicate adequately with the
interviewer

- 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

Subjects who meet any of the following criteria are disqualified from enrollment in the
study:

1. Patient or parent/guardian declines participation.

2. Female.

3. Subject or parent/guardian unable to communicate adequately with the interviewer.
We found this trial at
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Philadelphia, Pennsylvania 19134
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Chapel Hill, North Carolina 27599
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3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229
 1-513-636-4200 
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5050 Anthony Wayne Dr
Detroit, Michigan 48201
(313) 577-2424
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Gainesville, Florida 32610
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231 E Chestnut St
Louisville, Kentucky 40202
(502) 629-6000
Kosair Children's Hospital For more than a century, Kosair Children's Hospital and its predecessor hospitals...
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South 34th Street
Philadelphia, Pennsylvania 19104
 215-590-1000
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Boston, Massachusetts 02115
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Boston, Massachusetts 02118
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Bronx, New York 10467
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Cincinnati, Ohio 45220
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281 W. Lane Ave
Columbus, Ohio 43210
(614) 292-6446
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Davis, California 95616
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2301 Erwin Rd
Durham, North Carolina 27710
919-684-8111
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Memphis, Tennessee 38105
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307 N University Blvd
Mobile, Alabama 36688
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Oakland, California 94611
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940 NE 13th St
Oklahoma City, Oklahoma 73190
(405) 271-6458
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111 S 11th St
Philadelphia, Pennsylvania 19107
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San Francisco, California 94143
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