Submitted on August 31, 2026
The UCSF Lifetime Congenital Urology Program (LCUP) is one of only a handful of specialized clinics in the United States dedicated to caring for adults with congenital urologic conditions. Co-founded by pediatric urologist Hillary Copp, MD, MS, and adult reconstructive urologist Lindsay Hampson, MD, MAS, the program provides lifelong, multidisciplinary care for patients born with conditions such as spina bifida, Prune Belly syndrome, posterior urethral valves and other complex congenital disorders.
The program grew out of a simple but important realization: congenital urologic conditions do not end when childhood does.
Children with congenital urologic conditions often receive coordinated treatment from pediatric specialists, but many lose access to that expertise as adults. Patients frequently spend years navigating a fragmented health care system, delaying care or seeking treatment in emergency departments where clinicians may have little experience managing rare congenital conditions.
"At least once every clinic, someone tells us they felt abandoned after they aged out of pediatrics and didn't know a clinic like this even existed," said nurse practitioner Leslie Parnell. "Then they come here and meet people who understand their diagnosis and know how to care for them."
Rather than focusing only on the transition from pediatric to adult medicine, the program provides specialized care throughout their adult lives.
"We're thinking about every decision in the context of their entire lifetime and how it will affect their independence, health and quality of life years down the road," Dr. Copp said.
Today, patients travel to UCSF from across California and neighboring states, often after years without specialized care. About half transition from UCSF's pediatric urology program, while the remainder are referred from elsewhere after struggling to find providers familiar with their conditions.
Before each monthly clinic, pediatric and adult urologists meet to review every patient's history and develop a coordinated care plan. Depending on each patient's needs, specialists from nephrology, gynecology, oncology and other disciplines join the discussion.
For Parnell, one of the program's greatest rewards is seeing how that continuity changes patients' lives.
"I usually get to follow patients over many years," she said. "When we help improve their quality of life and then see them three years later, it's amazing how different they are from when we first met them."
As the clinic has grown, so has its research program. Recent studies from the LCUP team have examined health care utilization, behavioral health, kidney stone disease, prenatal care and other challenges facing children and adults with congenital urologic conditions. Together, the research seeks to identify gaps in care and generate evidence to improve outcomes for patients.
"We're trying to understand where the gaps in care exist and how they affect outcomes," Dr. Hampson said. "The goal is that the research we're doing today will directly inform how we care for patients tomorrow."
The team has also established a multi-institutional patient and caregiver registry that follows participants over time, collecting information on hospitalizations, emergency department visits, urinary symptoms, quality of life and caregiver experiences. Patients are asked what research questions matter most to them, helping shape future studies around the priorities of people living with these conditions.
"We have such high participation because patients want to help the next generation," Dr. Hampson said. "Many have spent their lives feeling like no one understands their condition. Being able to contribute to research gives them a voice."
Beyond improving care at UCSF, the team hopes its work will expand access to specialized care nationwide. Research findings may help inform health policy, while the program is already helping train the next generation of urologists.
"You can be a really well-trained urologist and still not know how to care for these patients," Hampson said. "There's a lot more education that we have to do not just for the primary care community, but actually within urology as well."
UCSF's pediatric urology fellowship includes an optional year focused on transitional urology – one of the only training experiences of its kind in the country. Former fellows have already gone on to establish congenital urology programs at medical centers around the United States, extending the reach of the LCUP model.
"Our hope isn't just to grow our own program," Dr. Hampson said. "It's to help create more programs like this, so wherever patients live, they have access to the specialized care they deserve."
How You Can Help
Private philanthropy helps sustain and expand LCUP’s research and clinical programs. Your support advances research and improves quality of life for adults with congenital urologic conditions. Please consider making a gift through our secure giving website.
For referrals and scheduling, please visit Urology at Parnassus or call 415.353.2200.
More information: LCUP website.