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The Epidemiology of Priapism (Sickle Cell Disease)

5 Years
Not Enrolling
Priapism, Anemia, Sickle Cell

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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.

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

- 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

Type of Study:


Study Design:

Observational Model: Cohort, Time Perspective: Retrospective

Outcome Measure:

Enumeration of the Prevalence of Priapism in Males With Sickle Cell Anemia and Sickle Beta Zero Thalassemia.

Outcome Time Frame:

At time of interview

Safety Issue:


Principal Investigator

Samir Ballas, MD

Investigator Role:

Study Chair

Investigator Affiliation:

Thomas Jefferson University


United States: Federal Government

Study ID:




Start Date:

August 2005

Completion Date:

March 2008

Related Keywords:

  • Priapism
  • Anemia, Sickle Cell
  • Sickle Cell Anemia
  • Anemia
  • Anemia, Sickle Cell
  • Priapism



Children's Hospital of Philadelphia Philadelphia, Pennsylvania  19104
Boston Medical Center Boston, Massachusetts  02118
University of Oklahoma Health Sciences Center Oklahoma City, Oklahoma  73104
St. Christopher's Hospital for Children Philadelphia, Pennsylvania  19134-1095
Kosair Children's Hospital Louisville, Kentucky  40202-3830
Cincinnati Children's Hospital Medical Center Cincinnati, Ohio  45229-3039
University of California, San Francisco San Francisco, California  94143
Duke University Medical Center Durham, North Carolina  27710
University of Colorado Health Sciences Center Denver, Colorado  80262
University of Florida Gainesville, Florida  32610-0277
Wayne State University Detroit, Michigan  48202
Ohio State University Columbus, Ohio  43210
Thomas Jefferson University Hospital Philadelphia, Pennsylvania  19131
University of North Carolina at Chapel Hill Chapel Hill, North Carolina  27599
University of South Alabama Mobile, Alabama  36693
University of Texas Medical Branch at Galveston Galveston, Texas  77555
University of California, Davis Sacramento, California  95818
Children's Hospital and Research Center at Oakland & Summit Medical Center Oakland, California  94609
Kaiser Permanente, Oakland Oakland, California  94611
Brigham and Women's Hospital at Harvard Medical School Boston, Massachusetts  02115
Children's Hospital of Boston Boston, Massachusetts  02115
Montefiore Medical Center and Children's Hospital at Montefiore Bronx, New York  10467
Children's Hospital Montefiore Bronx, New York  10467-2940
University of Cincinnati Hospital Cincinnati, Ohio  45267
St. Jude Children's Hospital Memphis, Tennessee  38105
University of Texas Children's Medical Center of Dallas Dallas, Texas  75390
University of Texas Parkland Health & Hospital System Dallas, Texas  75390-8852