Seattle Children’s seeking adult males with bladder exstrophy to survey for study

Bladder exstrophy is a complex condition occurring in about 1 in 50,000 children and often requiring multiple surgical procedures throughout a person’s life.  Yet few studies in the medical literature have looked at the experience for people living with this condition from their own perspective.

The research team at Seattle Children’s Hospital would like to learn more about genital perception and sexual function in men with the diagnosis of bladder exstrophy.  This would be the first study to look at genital perception in men with bladder exstrophy.

The results will help us to better counsel families with a new diagnosis and improve how we care for men with this condition throughout their lives.

We are looking to recruit participants who are:

  • Males with a diagnosis of bladder exstrophy, and
  • Not considered a minor in their jurisdiction

Participants in the study will be asked to complete a survey. The survey is 31 questions long and takes an estimated 10 minutes to complete.  You might feel uncomfortable answering some questions on the survey, which ask about genital perception and sexual function. You could skip any questions you did not want to answer.

I meet the qualifications and will take the survey.

If you join the study, your responses confidential as provided by law.  The survey is completely anonymous and care will be taken not to collect any details that identify you, such as your name, address or date of birth. Your IP address will not be tracked and there will be no way to know whether you complete this survey.

If you have any questions about the study we will be happy to talk to you.  Please email our Pediatric Urology Fellow who is coordinating this study at [email protected].

We look forward to participation from the A-BE-C community in this important research topic.

Pamela Block, Executive Director, A-BE-C
Paul Merguerian, MD, MS, Division Chief of Urology, Seattle Children’s Hospital
Margarett Shnorhavorian, MD, SPH, Director of Research Division of Urology, Seattle Children’s Hospital
Courtney Rowe, MD, Pediatric Urology Fellow, Seattle Children’s Hospital
Jennifer Ahn, MD, Acting Instructor of Urology, Seattle Children’s Hospital