Registry Data on Access to Care Presented at Digestive Diseases Week
- PSC Partners Patient Registry
- 5 days ago
- 2 min read
In May 2025, the annual Digestive Disease Week (DDW) conference was held in San Diego, California. This conference brings together clinicians, researchers, and industry leaders from across gastroenterology, hepatology, and other related fields of medicine. De-identified results from the Registry’s Health Equity in PSC Survey were presented in a poster session at the DDW conference. Led by Dr. Kidist Yimam (California Pacific Medical Center) and co-authored by members of the Registry team and PSC Partners’ Health Equity Committee, the poster highlighted socioeconomic and demographic factors of people living with PSC, and how these factors can impact the quality of healthcare patients receive.
Results from the Survey
Some highlights from the poster include:
Women were more likely to report a delay in PSC diagnosis.
Household income was associated with satisfaction with healthcare received.
About 20% of respondents live more than 100 miles from the nearest transplant center.
Only 11% of respondents have ever participated in a clinical trial.
Your Voice is Needed
At the time this poster was presented, 541 Registry participants had completed the Health Equity Survey. While this is an excellent start, every additional response matters— a particularly high response rate is needed to identify patterns in the wide experiences of this community. The survey is still available in the Registry for you to complete today.
As always, no identifying information ever leaves the Registry. Your responses are kept confidential and only de-identified data is shared with researchers.
Thank you to all Registry participants who have added their voice to this survey! In addition to supporting the search for a cure for PSC, you are accelerating research to improve PSC care for all.