Summary

Eligibility
for people ages 18 years and up (full criteria)
Healthy Volunteers
healthy people welcome
Location
at UCSF
Dates
study started
completion around
Principal Investigator
by Meyeon Park, MD (ucsf)
Headshot of Meyeon Park
Meyeon Park

Description

Summary

Individuals with a diagnosis of autosomal dominant polycystic kidney disease (ADPKD) often have a family history of the condition although up to 10-15% of cases are sporadic mutations. The investigators recently conducted an analysis of the investigators clinic population to determine percentages of individuals who have undergone kidney imaging and genetic testing and determined total numbers of patients eligible for tolvaptan and those currently active on tolvaptan. The study team found large racial discrepancies in usage of tolvaptan and found that more patients are eligible for tolvaptan than are currently taking the medication. Reasons for this are often due to patient perception about the medication rather than treatment failure. There is a strong medical need to understand reasons for underuse of this critical medication in this population. Among those with genetic testing, the study team found large disparities in ethnic background between individuals offered genetic testing who accept versus decline testing. The study team also found that those who choose to pursue genetic testing are more likely to have no family history of the condition, presumably because the diagnosis is more "surprising" to them and thus desire for verification by genetic testing, if possible, is greater. However, it is known that genetic testing can be an important component of understanding of disease biology in all patients with ADPKD, while also providing important clinical information in some cases as individuals prepare for living donor transplantation or family planning. The investigators seek to understand barriers to use of tolvaptan and genetic testing among individuals in the clinic population and their relatives across a wide range of racial and ethnic backgrounds. The investigators hypothesize that anxiety about genetic conditions in particular is a barrier to accepting testing. The investigators seek to understand the mental health aspects of the diagnosis of ADPKD. They will also evaluate changes in symptoms compared to pre-treatment after initiation of tolvaptan in eligible individuals using qualitative techniques. In so doing, the study team hope to improve care for current patients and also to expand the pool of the clinic population to include newly diagnosed family members ideally at early stages of disease.

Official Title

Using Culturally-sensitive Discussions and Genetic Testing to Improve Access to Early Autosomal Dominant Polycystic Kidney Disease Care and Improve Health Disparities

Keywords

ADPKD, Kidney Diseases, Polycystic Kidney Diseases, Autosomal Dominant Polycystic Kidney

Eligibility

You can join if…

Open to people ages 18 years and up

- Diagnosis of ADPKD

You CAN'T join if...

Location

  • UCSF accepting new patients
    San Francisco California 94143 United States

Lead Scientist at University of California Health

  • Meyeon Park, MD (ucsf)
    My research focuses on patient outcomes in genetic kidney diseases including polycystic kidney disease and APOL1-mediated kidney disease. I am the medical director of the UCSF PKD Center of Excellence and principal investigator of the UCSF Cardiovascular Risk After Kidney Transplantation (CARAKTER) study.

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
University of California, San Francisco
ID
NCT06085807
Study Type
Observational
Participants
Expecting 100 study participants
Last Updated