Research Topic: Transitional Urology: Studies related to age-appropriate care for people moving through adolescence into adulthood with complex congential urologic issues.
Study Title: Lifetime Congenital Urology Program (LCUP)
Research Team:
Lindsay Hampson, MD, MAS, Principal Investigator (PI)
TBA, Clinical Research Coordinator
Sponsor: NIH Clinical Center
Study Overview
Establish a registry with access to routine medical care data to enhance clinical care and to support research efforts in this regard. This registry will also be linked with a caregiver registry in order to investigate the amount of burden of caregivers, and what relation this burden may have to the wellbeing of congenital urology patients seen at UCSF.
Transitional urology is a developing subspeciality within the field of urology. This field is driven by new demands for age-appropriate care for people moving through adolescence into adulthood with complex congential urologic issues. Developing specialized, tailored, and outcome-driven care and interventions to meet patient needs in this growing field requires centralized resources and directed research efforts. This study aims to address these issues by establishing a comprehensive registry of transitional urology patients.
Who can join?
- Patients that have been diagnosed with a congenital or pediatric urologic condition.
- Patients that have been diagnosed with a congenital or pediatric urologic condition.
What to Expect During the Study
Surveys
In person and remote
Mission Bay campus
China Basin
Mount Zion
- Participation supports the establishment of the registry which will help with the development and advancement of specialized, patient-centered, outcomes-driven care through a centralized resource.
- Participation helps doctors improve understanding of the unique healthcare needs of adolescents and adults with complex congenital urologic conditions, supporting the development of age-appropriate care for this growing population.
FAQ's
10 years
Patients will be recruited to the registry during routine clinic visits and will be enrolled by our study coordinator. Patients will complete the questionnaire following the consent and will receive yearly REDcap questionnaires to be completed online.
N/A
500
Contact us
TBA, Clinical Research Coordinator