The Association for the Bladder Exstrophy Community (A-BE-C) wants to shorten the time it takes families to find complete and effective care for their children born with bladder or cloacal exstrophy.

That’s why A-BE-C is launching a Centers of Excellence program that recognizes best-in-class care. The first eight U.S. hospitals to report meeting its rigorous criteria are:

• Boston Children’s Hospital
• Children’s Hospital Los Angeles
• Children’s Hospital of Philadelphia
• Children’s Hospital of Wisconsin
• Cincinnati Children’s
• Johns Hopkins Children’s Center
• Riley Children’s Health
• Seattle Children’s

Because bladder and cloacal exstrophy are so rare, most primary care doctors, gynecologists and obstetricians have never heard of them and lack the knowledge and experience to make effective referrals. Until now, finding experts required persistence, exhaustive research, travel, and some trial and error. Substandard care has not been uncommon because there hasn’t been any clear criteria for quality or sources for objective information for patients.

What it takes to qualify as a Center of Excellence for  bladder and cloacal exstrophy

The Centers of Excellence program is the first to identify criteria for the highest standards of treatment for bladder and cloacal exstrophy, including post-operative and long-term care.

Each Center of Excellence on the A-BE-C list meets the following 10 criteria deemed vital to treating the complex needs of infants and children with bladder and cloacal exstrophy:

1. Program is led by a physician/medical director who has at least five years post-fellowship training in pediatric urology/surgery.
2. Hospital actively follows a sufficient number of patients to be exposed to the diverse manifestations of bladder and cloacal exstrophy and offer wide array of treatment options.
3. Program delivers care to patients in a team model that addresses the broad spectrum of symptoms and treatment options for bladder and cloacal exstrophy.
4. Care team collaborates with identified orthopedic surgeons, pediatric anesthesiologists, radiologists, plastic surgeons, and when necessary, neurosurgeons and gastroenterologists who have expertise and interest in comprehensively treating child with bladder and cloacal exstrophy.
5. Hospital offers inpatient nursing and outpatient staff who have received specialized training and are experienced in bladder and cloacal exstrophy reconstructive surgeries, and are familiar with catheterization training, catheterization management, and bladder irrigations.
6. Board-certified behavioral health specialists are included in the care team to provide support to patients and families throughout the lifespan of treatment, and offer resource interventions, education, and individual, family and group therapy.
7. A pelvic floor physical therapist with an interest in specific pelvic floor physical therapy and biofeedback is included on the care team.
8. The hospital engages in single or multi-center research to share their patient information and program results. This information should be collected either through its own registry or through participation in a national/international registry.
9. Protocols are provided to transition pediatric patients into adult services at the proper time.
10. Program offers patients and families access to current information about bladder and cloacal exstrophy through support group activities and collaboration with A-BE-C events.

The Centers of Excellence is an evolving list that currently only includes U.S. hospitals that completed A-BE-C’s application process and passed the screening criteria. A-BE-C expects the list to grow as more hospitals in the U.S. and other countries apply for this designation.

A network of excellence in treatment of exstrophy

A-BE-C will bring all Center of Excellence members together at least annually for the programs to share updates on care activities and research initiatives. Each center of excellence must re-designate every three years. This process includes an application and review of achievements by a peer-review committee and A-BE-C staff.

Regardless of where you seek care, A-BE-C encourages families to consider the 10 criteria of excellence when evaluating any providers.

Learn more about Centers of Excellence

Hospitals worldwide are encouraged to apply for a COE designation for their bladder and cloacal exstrophy program. Learn how.

To find out more about the latest in care for bladder and cloacal exstrophy, visit the A-BE-C education pages or join us on Facebook and Twitter.