"We are uniquely situated to help determine and chart the trajectory of PSC research," says PSC Partners Board Member Jesse Kirkpatrick. "I believe strongly in what we're doing to give a voice to everyone in our community. The outcome of the ROADMAP Initiative will have an impact for years to come."
_________________________
ROADMAP Initiative
In-Depth, Engaging, Thought-Provoking
Every ROADMAP Initiative webinar was tailored to meet the needs of the PSC community.
Watch Recordings of ROADMAP Initiative Webinars Here
EDUCATIONAL MATERIALS
CLICK HERE for downloadable ROADMAP Initiative resources.
Learn more about the ICRNetwork (International Collaborative Research Network).
Learn more about PSC Partners WIND-PSC Prospective Synthetic Cohort Worldwide Integration of Natural History Databases.
Watch this video to learn more about the PSC Partners 2021 ROADMAP Initiative. This was part of a poster presentation at the 2021 Global Genes conference.
Click below for links to recordings of our past ROADMAP Initiative webinars.
What is the ROADMAP Initiative Series?
What is the ROADMAP Initiative?
The ROADMAP Initiative series was designed to build a foundation of knowledge and collaboration in preparation for the PSC Partners 2022 Conference, which was June 2-5, 2022.
What topics did the ROADMAP Initiative cover?
The webinars covered four topics: Patient-Reported Outcome Measures (PROMs), PSC Research, Drug Development, and Natural History. These key topics all lead towards PSC treatments and a cure.
Who participated in the ROADMAP Initiative?
Participants included PSC patients, post-transplant PSC patients, caregivers, clinicians, and researchers They all shared their PSC experience and hopes for the future, including finding effective treatments and a cure for PSC. These educational sessions, which were recorded, also ensure that our entire community is up to speed on topics important to all of us.
How many sessions are there and how were they organized?
Recordings of all 10 sessions are above. The webinars were divided into two sections. During the first half, experts disseminated information on the given topic. During the second half, attendees were divided into breakout rooms to discuss the topic and share thoughts/experiences. The second half was not recorded, but careful notes were taken. All comments were de-identified.
Viewers of the ROADMAP Initiative webinar recordings above have the opportunity to:
- Find out how you can have a significant impact on PSC research
- View educational sessions to bring everyone up to speed
- Develop collective knowledge within our community
- Discover how to build relationships and collaborate with others
Check our EVENTS page and social media pages for upcoming webinars and other opportunities to learn and collaborate.
PSC Partners updates are always included in our monthly newsletter The Duct.
Click here to be sure you're on our email list, so you don't miss important information.
List Three Biggest Concerns, Send Us Your Comments/Questions
Use the form below to:
- Share with us your three biggest concerns that you would like to see studied in future PSC research
- Send us questions or comments regarding the ROADMAP Initiative, or send an email to contactus@pscpartners.org
You do not have to fill in every box. Concerns, comments, and questions are accepted on an ongoing basis.
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Find information about clinical trials.
