Now Available: Clinical Survey 2026
- PSC Partners Patient Registry
- 6 days ago
- 2 min read
The new Clinical Survey 2026 was just released and is available in your Registry account. Have you ever wondered why the Registry updates this survey every year and why we request that you update it annually?
What’s new? In the Clinical Survey 2026, you will find changes and additions to the Symptoms section. These updates include questions developed by the PSC Partners’ Symptom Assessment Project (SAP) team and asked in the recent Symptom Assessment Survey (now closed). The goal of the SAP initiative is to create a validated patient-reported outcome measure that can be used to measure endpoints in clinical trials. Including the same questions in the Clinical Survey supports that goal.
Additionally, some questions have been reworded to bring them into alignment with surveys now being used in the international WIND-PSC project. In this way, more corresponding data points can be collected, accelerating PSC research.
All participants who have not filled out a Clinical Survey in the last six months are invited to log in and fill out the 2026 version now. If you completed the Clinical Survey 2025 more recently, it is preferable that you wait until a little later this year to complete the new version. Prior responses will be pre-filled where appropriate to help you move through the survey more quickly.
No change in your health? It is just as important to take the survey yearly if you have had no change in symptoms as it is to report health changes. Both are vital information to researchers working hard to map out how PSC progresses – or doesn’t – and under what circumstances. For example, perhaps medication you are taking or a diet you are following is helping you. That is key information.
You’ve had a transplant? It’s important to update the survey annually so that we know that you have had a transplant (a significant outcome) and whether or not you have had a recurrence of PSC since then.
Your survey responses and general profile information determine some of the emails we send you. When the Registry team sends out emails recruiting for clinical trials, we filter for basic eligibility based on your latest survey responses and demographic information, such as your age or where you live. You will receive more appropriate emails about trial opportunities if your survey and your profile information are up to date.
Accurate survey data is key to advancing PSC research – please take the Clinical Survey 2026!
