A New Era for the PSC Partners Registry Community

Dear Registry Participants (Current and Future), 

 

This year is the 10th anniversary of the PSC Partners Patient Registry, a perfect time for renewal, for the upgrade you can experience when you log into the Registry. What you will experience is only the tip of the iceberg. The Registry is fulfilling a PSC Partners dream transformed into the tangible goal of facilitating and speeding up research towards PSC treatments and a cure. 

 

This progress could only take place thanks to all of you participating in the Registry. With your enthusiasm to embark on this journey, you’ve helped open many new paths leading to patient-centered research, advocacy for our unmet needs, and empowerment of our 2,500 voices. Thanks to all 2,500 Registry participants, the Registry is thriving.

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A New Registry Experience

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I will start with the tip of the iceberg, what you will experience when you enter your new space in the Registry and its website. (Please check out the Registry website for the short video tutorials created to help you log in and navigate through the new features.)

 

• The platform has multi-language capabilities for our international participants or for those whose native language is not English. (The Registry platform supports English, Spanish, French, Italian, and German. The surveys are in English at this time but will be translated into these languages in the near future.) 

• You can now securely share your experience with your physicians and family members.

• You will be able to upload medical documents, MRIs, school forms, genetic reports, and more.

• You can track your symptoms and activities and share them with your physicians.

• The Registry has the capability to keep track of your adherence to medications and adverse events.

• You can create journal entries to describe the care you are receiving or the symptoms you are experiencing.

• The Registry website is regularly updated with news on clinical trials, physicians treating Registry participants (Physician Map), the impact you are having on PSC research, and general news.

To access your new Registry home, go to www.pscpartnersregistry.org and select “Join Now” if you are NOT an existing participant. However, if you are an existing participant, you need to select “Log in,” and only then can you click on “Forgot my password.”

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Your Collective Impact Matters

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The above features are what you can see. Below are a few of the PSC Partners initiatives that lie beneath the visible tip of the iceberg. They were each enabled by your participation in the Registry.  

 

 

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• Your de-identified responses to Registry questions have helped shape the PSC Partners Strategic Research Plan. Over 800 people with PSC responded to Our Voices Survey and expressed their priorities, which PSC Partners scientists and PSC thought leaders translated and transformed into a research plan. An in-person inaugural meeting brought together the PSC Partners International Collaborative Research Network (ICRNetwork) in 2023. Patients, clinicians, researchers, data analysts, and regulators (FDA representatives) formed working groups to discuss your research priorities and ways of implementing them with scientific rigor. Projects are already ongoing.

 

• WIND-PSC was created in response to your research priorities and unmet needs. You let us know that your top research priority was to slow down disease progression. Gaps were identified, one of which is the absence of dependable and solid PSC biomarkers, which are a requirement to determine whether a PSC drug is effective and can be approved. Over 10 medical centers and 2,000 people with PSC will be participating in this massive initiative. We will ask you for your participation. 

 

• Registry data informed us about the PSC symptoms that affect your quality of life, and, in response, a Symptom Assessment Program (SAP) was created. Two experts interviewed some of you to listen to your description of your PSC symptoms. They are currently translating what they heard from you into validated tools that can be used in clinical trials to objectively measure changes in your symptoms. It is only through your participation and engagement that these tools can be developed and be used to determine the success of a new PSC drug.  

 

Joining a rare disease registry is a powerful act that goes beyond simply providing data. It’s about building community, advocating for change, and actively participating in research. By adding your voices to the Registry, you are powerful partners in the quest for a cure. Patients are moving mountains, and the decision-makers are clearly hearing us.

 

Please know that each email we send you is tied to our collective mission. Please do your very best to respond if you possibly can. 

 

The Registry Team sending you these messages is comprised of three Moms whose children have PSC and two people with close connections to PSC. All of us together are passionately working towards treatments and a cure. 

 

JOIN THE RACE! YOUR JOURNEY MATTERS. Together we are creating a world where a PSC diagnosis comes with a cure!

 

                                      Rachel Gomel

                                                                             Director, PSC Partners Patient Registry

                  

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The 3 Unstoppable PSC Moms who Believe in the PSC Community’s unshakable Power!

THE PSC PARTNERS REGISTRY TEAM

Rachel Gomel, Director

Sharon Nanz, Registry Curator

Mary Vyas, Registry Strategist

Susan O’Dell, Registry Analyst

Brian Thorsen, Registry Webmaster

 

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