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!

welcomeYou may equate the registry with the clinical survey that we ask you to fill out. While that is a core function, the registry is not just a single survey. It is a program, a series of surveys, a repository for clinical trial information that may be relevant to you, and an interactive community hub. Please log in frequently and respond when we email. Together, patients and researchers are the front-line team, pushing towards the goal of better PSC treatments and, ultimately, a cure. 

As you’ll see, every part of this new site is related to our goal. May we give you a tour of our new home so that you can find your way around? Read on!

Once you have set up an account, the PROFILE page is your home base and where you are directed after you log in. Arranged in dashboard fashion, it’s a blueprint for all the ways that you can be involved. Here you will find:

  • Surveys (of course!) – not just one, but several. These have different purposes, so please take them all!
  • A place to add your medical records (needed to confirm your diagnosis) and healthcare providers (add your physician to the interactive physician map)
  • “Your data at work” – you’ll be intrigued to read the aggregate data for survey questions and see if others are experiencing PSC the same way you are
  • The latest registry newsletters and articles and an archive of older ones. Watch for our launch of a new quarterly newsletter later this year
  • A place to connect immediate family member PSC registry records and an e-form to invite any extended family members who have PSC to join the registry
  • Your account information, which can be updated

The tabs across the top of each page have drop-down menus listing everything in that “room” of our new home:

  • HOME – includes the registry welcome message, info about PSC and about us, and how to contact us
  • RESOURCES – this includes a lot of great info! Current & past clinical trials, PSC Partners’ collaborative work, your registry data’s impact, a glossary and FAQs
  • PROFILE – your shortcut to your dashboard
  • VIEW DATA – your shortcut to the aggregate data information

That’s the quick tour. Please linger on the site and explore all its features. We hope that you will be inspired to be an active part of our team!

BE SURE TO ADD registrycoordinator@pscpartners.org TO YOUR EMAIL CONTACTS LIST SO THAT OUR IMPORTANT EMAILS ARRIVE SAFELY IN YOUR BOX.

We’re together in the fight, whatever it takes!

The Registry Team

Rachel Gomel, Sharon Nanz, Mary Vyas

PSC Partners Patient Registry

registrycoordinator@pscpartners.org

 

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