Prospective Cohort of Transitional Urology Patients

The care and management of pediatric patients with congenital genitourinary anomalies
transitioning to adolescents and later adults is undergoing a period of profound
transformation. Due to improvements in surgical and nonsurgical interventions, children with
diverse congenital disease affecting the genitourinary tract are surviving into adulthood at
far higher rates than in the past. As an example, up to 70-75% of children born with a
myelomeningocele and consequent neurogenic bladder are living past the age of twenty. These
new expectations, especially in the areas of sexual function, fertility and reproductive
health, are creating previously unseen challenges for health care providers attempting to
transition adolescents from pediatric to adult care. As this patient population continues to
grow, the transitional process for urological care of congenital anomalies is progressively
becoming a topic of vital importance.

We plan to advance adolescence clinical and research care and pioneering a unique and novel
opportunity in transitional care.

This database will help us: 1. To develop and revise (as necessary) standards of care and
treatment best practices for patients transitioning to adolescents with congenital
genitourinary malformation. 2. To share evidence-based information between physicians across
the country, advancing best practices for the secondary conditions of spina bifida,
exstrophy, neurogenic bladder and bowel, and hydrocephalus. 3. To implement benchmarks to
improve care in transitional urology clinics. 4. Evaluate the clinical cost-effectiveness of
care offered.

Inclusion Criteria:

- Primary diagnosis of congenital genitourinary abnormality leading to neurogenic bladder
such as myelomeningocele, exstrophy, cerebral palsy, posterior urethral valve, congenital
cardiac anomalies, chromosomal abnormalities, etc.

Exclusion Criteria:

- Any causes for neurogenic bladder that occurred after age 18.