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

Adding the patient perspective to medical literature on bladder exstrophy

Bladder and cloacal exstrophy are complex conditions 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 is working to add the patient perspective to the body of research on bladder exstrophy is seeking help from the A-BE-C community. The team is seeking to learn more about sexual, reproductive and urinary function in women with the diagnosis of bladder exstrophy.

The information will help guide future directions in patient care for women with bladder exstrophy throughout their lives.

Seeking women with bladder exstrophy for a 15 minute anonymous survey

The team is recruiting participants who are:

  • Female 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 consists of approximately 38 questions. Allow about 15 minutes to complete it. You might feel uncomfortable answering some questions on the survey, which ask about genital perception and urinary function. You will be able to skip any questions you do 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 the team will be happy to talk to you. Please email Katie Canalichio, the 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.

  • Katie Canalichio, Pediatric Urology Fellow, Principal Investigator
  • Pamela Block, Executive Director, A-BE-C, Co-author
  • Jennifer Ahn, Associate Professor in Urology, Second Author
  • Anne-Marie Amies Oelschlager, Professor of Obstetrics and Gynecology, Co-author
  • Paul Merguerian, Professor in Urology, Co-author
  • Courtney Rowe, Associate Professor in Urology, Co-author
  • Margarett Shnorhavorian, Professor of Obstetrics and Gynecology, Co-author

Results of survey of adult men now available

A similar survey, focused on the male perspective of bladder exstrophy patients was conducted by researchers at Seattle Children’s Hospital in collaboration with Association for the Bladder Exstrophy Community (A-BE-C).  It is the first research study to focus on genital perception in adult men with bladder exstrophy. Read more.