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Research & Innovation

At Boston Children’s, we are working to bring safer and more effective treatments to our patients with bladder exstrophy. Some key areas of our research include:

Genetics and gene expression

Although there is strong evidence that genetic factors play a role in the development of bladder exstrophy, cloacal exstrophy, and epispadias, the genetics of these conditions is not fully understood. We are making strides in this area by identifying genetic variants and differential gene expression in patients with these conditions. Our efforts may aid in developing screening methods, progressing treatment strategies, and defining embryologic origins of bladder exstrophy, cloacal exstrophy, and epispadias.

Urinary continence and penile appearance

The Bladder Exstrophy Program continues to seek innovative ways to improve postoperative outcomes. With a combination of surgery and non-invasive methods, we have developed improved strategies to help children with bladder exstrophy better stay dry. We are currently devising research strategies to objectively study the effectiveness of our approach. We are also actively studying variation in surgical technique and postoperative management that may improve penile appearance in boys affected by bladder exstrophy.

Multi-institutional Bladder Exstrophy Collaborative

The MIBEC consists of pediatric urologic surgeons from Boston Children’s, Children’s Hospital of Philadelphia, and Children’s Hospital of Wisconsin with a specific interest and dedication to the care of patients with of bladder exstrophy, cloacal exstrophy, and epispadias.

With consent, surgeries are broadcasted live to facilitate real-time observation and teaching. MIBEC participants discuss technical details of the surgery in real time and record them for analysis, retrospective review, and critique. Within the past 10 years, the collaborative has included more than 200 cases of bladder exstrophy, cloacal exstrophy, or epispadias. We also conduct intraoperative discussions and monthly meetings to continuously refine surgical technique and improve outcomes. For all patients who consent to being part of the collaborative, we prospectively record deidentified data related to outcomes.

This collaboration has yielded significant contributions for our field. As we approach the third decade of this collaboration, we hope to provide additional insights pertaining to long-term bladder development, continence, and health-related quality of life.