A New Chapter for the Registry
- PSC Partners Patient Registry
- Sep 4
- 2 min read
Dear PSC Registry Community,
It is time for me to leave my position of Director of the PSC Partners Patient Registry. As founder of the Registry, I’ve lived through the realization of what sixteen years ago had seemed like an unreachable dream. Even before its inception, we knew how potentially valuable this Registry could be as a repository of data on our rare and complicated disease with patients thinly spread out throughout the world.
Through the years, I witnessed how the Registry gradually became a magnet attracting drug developers and researchers. I cherished the lasting relationships I formed by the simple act of answering questions about the Registry to those living with PSC and to researchers wanting to get closer to our community. It was a gift to see the spark in the eyes of drug developers who said they felt “a new sense of purpose in their work” and “fresh excitement each day as they worked on their drug” after hearing PSCers telling the story of their PSC journey. We’ve had countless rewards. You’ve made patient-partnered research a reality!
I leave the Registry in great hands. Brian Thorsen, who has been working with me as Associate Director, has seamlessly taken my place. As a person living with PSC, Brian is as passionate as I am about finding solutions to resolve PSC. His expertise as a statistician educated at the University of California, Berkeley, serves the Registry well, especially now that the Registry is partnering in research, initiating research, and powerfully representing the patient voice.
The change in leadership doesn’t change anything with the Registry protocol. You will always maintain the right to withdraw from the Registry, and once in the Registry, you don’t need to go through the consent process again. If you have any questions, don’t hesitate to contact Brian (brian@pscpartners.org).
For those of you who have become my friends, you know where to find me. I will always be there for you (rachel@pscpartners.org).
With love and gratitude,
Rachel Gomel
