PSC Partners Seeking a Cure 2020 Accomplishments
Making Our Voices Heard: Patient Focused Drug-Development Forum
PSC Partners conducted the successful Making Our Voices Heard: Patient-Focused Drug Development Forum (PFDD). This once-in-a-lifetime, virtual event educated FDA, drug development leaders, and researchers about the vital need for effective treatments and a cure for PSC. The Forum was a patient-driven initiative through and through. The PSC community’s financial support of this project was so extensive that the funds completely covered all meeting expenses.
PSC Partners Conference Webinar Series
Over the past year, we conducted seven informative webinars, in lieu of our postponed, in-person 2020 Conference, to ensure that our U.S. and global communities stay informed and educated about PSC, treatments, PSC research, and more. This initiative was so successful, with recordings receiving more than 5,000 views so far, that it has prompted the development of a new virtual PSC Partners Learning Series and Collaboration Hub for international medical providers, researchers, patients, and caregivers. This exciting initiative is in the planning stage, and will begin soon.
Total Grants Awards Exceed $4 Million
Every year, on the recommendation of the Scientific/Medical Advisory Committee (SMAC), the PSC Partners’ Board of Directors reviews all applications and supports the most promising PSC-related studies. In 2020, we announced the funding of seven international studies, plus three more in conjunction with our affiliate PSC Partners Canada. This brings our funding total to more than $4 million.
PSC Partners Patient Registry
The PSC Partners Patient Registry was initiated in response to the difficulty of locating PSC patients and PSC data to conduct research on our rare disease and to empower the patient voice. Since its creation, more than 1,700 confirmed PSC patients have added their de-identified information. In 2020, the PSC Partners Registry was upgraded and enhanced to meet the changes in PSC research and to provide a more interactive platform for registry participants. The increased capabilities of this new version will accelerate research and clinical trials. We also experienced an unprecedented surge in the number of Registry participants over the past year, evidence of the eagerness and readiness of the PSC community to participate in PSC research.
PSC Peer-to-Peer Virtual Support
Early in the COVID-19 pandemic, PSC Partners created virtual gatherings for the PSC community. (See our EVENTS page.) The purpose of these support groups, called ZoomRooms, is to continue to respond to the social and emotional needs of our community despite the postponement of the last two PSC Partners Conferences and the effects of separation due to the pandemic. ZoomRooms are for teen PSCers, adult PSCers, spouses/caregivers, and parents of pediatric, teen, and adult patients. The program has been so successful that it will continue through 2021 and beyond.
One of 30 Nonprofits Selected for CZI Rare As One Initiative
We were thrilled and honored to be one of 30 patient-led organizations chosen for the Chan Zuckerberg Initiative's Rare As One Project, which was designed to establish patient-driven collaborative research networks with international researchers, identify gaps in PSC research, and stimulate specific research towards closing these research gaps. The 30 grantee organizations are working together with the guidance of the Rare As One science team, which has been providing us with rich resources and tools to achieve these goals. Over the past year, PSC Partners has participated in numerous educational webinars and nonprofit gatherings. These opportunities will continue into 2022.
Launched a Specialist Map
PSC Partners created a dynamic specialist map, making it easier for our community to locate PSC healthcare providers near them. This impactful tool was launched in late 2020 with assistance from Komodo Health, a healthcare data management company. This partnership also has helped us identify and communicate directly with more PSC physicians, nurse practitioners, physician assistants, and researchers.
PSC and COVID-19 Survey
We developed the only PSC-specific COVID-19 Survey, which was launched as soon as the COVID-19 pandemic began in the spring of 2020. Aggregated information will be shared publicly in a de-identified format. Additionally, we created a regularly-updated COVID-19 page on our website to keep our community informed about pandemic issues related to PSC and other related conditions. Additionally, we offered three webinars focused on coping with PSC during the pandemic.
New, Enhanced Website
The PSC Partners website is a vital, dynamic, educational tool for the PSC community. In 2020, PSC Partners launched an improved version of the website for more effective and impactful dissemination of information.
The website serves as a hub for the PSC community, and provides continually-updated material for PSC patients, PSCers facing a transplant, caregivers, parents, and more.
PSC Partners Patient and Caregiver Conferences
PSC Partners Seeking a Cure holds a conference every year, in conjunction with a major medical center. The conference draws patients and caregivers together (spouses, partners, parents, siblings, and friends of PSC patients) to learn about the latest research on treatments, medications, procedures, and disease outlook. There are peer support and discussion sessions with physicians. Speakers at our conferences are internationally-recognized PSC thought leaders, and they come from the U.S. as well as international PSC treatment and research centers. The first conference was held in 2005. While the 2020 and 2021 conferences were postponed due to the COVID-19 pandemic, we are excited to gather, once again, in 2022 for the 16th PSC Partners Seeking a Cure Conference in Boston, MA, in conjunction with Brigham and Women’s Hospital and Massachusetts General Hospital.
International Research Forum
During the 2022 PSC Partners Conference, PSC Partners will conduct an International Research Forum bringing researchers together with our community to promote collaboration and expand research strategies for PSC.
PSC-Specific ICD-10-CM Code
PSC Partners obtained the first PSC-specific ICD-10-CM code (K83.01) that finally provides researchers with a robust tool for identifying PSC patients throughout the U.S., conducting epidemiological and natural history studies, and facilitating clinical trials. PSC Partners continues to promote awareness of this vitally important, disease-specific code.
Living with PSC Podcast and Monthly E-Newsletter
Thanks to the brilliant time and effort of PSC patient, volunteer, and Media Producer Niall McKay, PSC Partners has produced 21 episodes of our Living with PSC Podcast. Each month, this podcast explores the latest research and knowledge about PSC. Topics range from patient stories to the latest research updates from PSC experts to collaborations that are crucial to finding better treatments and a cure for PSC. PSC Partners also distributes a monthly e-newsletter The Duct, to ensure our PSC community stays up-to-date about advances towards a cure, events, support opportunities, fundraising activities, conference updates, and more.
PSC Partners Seeking a Cure remains dedicated to our mission of finding effective treatments and a cure for primary sclerosing cholangitis (PSC). We are also focused on supporting the thousands of PSC patients, families, and caregivers who are impacted by PSC. We constantly review, enhance, and expand our programs and initiatives to ensure they are impactful, effective, and inclusive. Additionally, we continue to look for new programs and projects that move us closer to our vision of a world without primary sclerosing cholangitis (PSC). We remain together in the fight, whatever it takes.
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