The externally-led PFDD Forum for PSC was organized by PSC Partners, with the FDA, and held in October 2020. In preparation for the PFDD Forum, PSC Partners developed the Our Voices survey in order to systematically capture the frequency, and severity of PSC symptoms and to quantify symptom impact on physical function and daily life. This survey was distributed through the PSC Partners Patient Registry and the broader community from July to September 2020.
Visit the PSC Partners website for links to view the meeting on-demand.
The Voice of the Patient Report will be delivered to the FDA in early 2022 and will be available through the FDA for reference by industry and regulators in pursuit of drug development and an approved treatment for PSC. A link will be added here when the report is available.