News and Announcements

January 28, 2021

Clinical Trials Updated: PLN 74809 and Volixibat

The clinical trials resources page has been updated on 1/27/21 to reflect two clinical trials currently recruiting.

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March 01, 2021

Proof of Concept Phase 2 Trial of IMU-838 with Early Positive Results

A proof-of-concept Phase 2 trial conducted by Mayo Clinic and sponsored by Immunic has shown very early positive results.

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October 13, 2020

Successful registry appeal garners strong support

On October 6, 2020, the PSC Partners Registry team sent out an email alert regarding a Harvard Brigham and Women’s Hospital nutrition study that urgently needed more participants. This appeal was sent to adult U.S. registry participants and urged all who were interested to contact the Harvard researchers to find out more. Recipients responded in droves with emails and phone messages to the researchers – to the extent that the Harvard team had to add additional staff!

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September 23, 2020

Nutrition Study Recruiting Now (US residents)

Check out this video invitation from PSC nutrition study Principal Investigator Dr. Josh Korzenik to participate in a diet and nutrition study. Enrollment is open and ongoing. The study will be conducted remotely; patients can participate from anywhere in the USA.

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August 22, 2020

Ask the PSC Expert - Dr. Gideon Hirschfield

Joanne Hatchett, PSC Partners Medical Science Liaison, sat down for a zoom interview with Dr. Gideon Hirschfield.

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July 20, 2020

Our New Registry Home!

Welcome to Our Upgraded Registry Site!   We are thrilled to welcome you to our new patient registry home. Our growing family of PSC participants needed a new place to live, so – rather than just redecorate the old place – we decided to build a whole new home from the ground up! And it’s now mobile-friendly, too!

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April 01, 2020

Welcome to the PSC Partners Patient Registry!

If you or a loved one has the rare liver disease primary sclerosing cholangitis (PSC), you are in the right place!

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May 05, 2020

Expanded Registry Staff

Welcome Sharon Nanz!  We are pleased to announce that Sharon Nanz has expanded her role as a member of the PSC Partners staff. Sharon is the Assistant Registry Coordinator.

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May 04, 2020

COVID-19 and PSC Survey

We are witnessing a surge in COVID-19 registries for liver diseases, but none are PSC-specific. We believe it will be important to collect information on those of us who have/had/suspect having COVID-19. PSC Partners has thus launched (April 2020) a patient-reported COVID-19 PSC survey.

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May 01, 2020

The PSC Partners Patient Registry Origin Story

Little did we know that attending a workshop in Washington D.C. in 2010 would be instrumental in moving PSC Partners towards the unimaginable patient-generated and patient-driven research. In 2010, it was unthinkable that our rare primary sclerosing cholangitis could create a loud enough voice to have a measurable impact on PSC research. In 2009, PSC Partners, in its fifth year of existence, had awarded its first research grants, and we were excitedly searching for more ways of creating PSC awareness.

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September 04, 2014

PatientCrossroads Announcement

PatientCrossroads Launches New Patient Registries.  The new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program.

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