A huge THANK YOU! to everyone who has kept the PSC Partners Patient Registry an active and constantly growing beacon of the patient voice in PSC research! Thanks to your time and effort, 179 new participants living with PSC joined the Registry, and 416 surveys were completed between the Registry’s re-launch in March and August 31.
As part of the Registry’s 10th anniversary celebration, a drawing for three $100 gift cards was held for anyone who joined as a new participant, logged in and updated their profile information, and/or completed a survey by August 31. The winners of these gift cards have been randomly selected and contacted via email. To maintain the confidentiality of Registry participants, the Registry will not be announcing their names. Congratulations to the winners, and thank you to each and every person who participated in the Registry to enter this drawing!
Each actively engaged Registry participant and each completed survey provides a wealth of information to address pressing research questions and provide a better understanding of the impact of PSC on people living with the disease.
There is always more to do– if you haven’t yet updated your profile information or taken the 2024 Clinical Survey, please log in and complete these tasks today! Stay tuned for two new surveys that will be launching in the coming weeks…
Together, we are creating a world where a PSC diagnosis comes with a cure.
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