Registry Impact

2025. Digestive Disease Week Abstract and Poster: DIVERSITY AND SOCIOECONOMIC STATUS OF PATIENTS WITH PRIMARY SCLEROSING CHOLANGITIS (PSC) AND ITS IMPACT ON HEALTHCARE RECEIVED, A SURVEY OF PSC PARTNERS PATIENT REGISTRY

2025. AASLD The Liver Meeting: SYMPTOM PROFILES AMONG ADULTS WITH PRIMARY SCLEROSING CHOLANGITIS IDENTIFIES LOW, MODERATE AND HIGH BURDENED GROUPS

2025. AASLD The Liver Meeting Abstract and Poster: 4540: "IT'S MORE LIKE A DULL, ACHY PAIN THAT'S JUST CONSTANT": LIVER PAIN EXPERIENCES IN ADULTS WITH PRIMARY SCLEROSING CHOLANGITIS (PSC) TO INFORM MEASURE DEVELOPMENT

2025. AASLD The Liver Meeting Abstract and Poster: 4479: "THIS IS NOT NORMAL”; UNDERSTANDING COGNITIVE IMPAIRMENT THROUGH QUALITATIVE INTERVIEWS WITH ADULTS WITH PSC TO INFORM MEASURE DEVELOPMENT

2025. AASLD The Liver Meeting Abstract and Poster: 4476: IDENTIFYING GAPS IN PSC PATIENT EDUCATION AND UNDERSTANDING OF CHOLANGIOCARCINOMA SCREENING AND SURVEILLANCE PRACTICES: RESULTS OF A MULTINATIONAL PATIENT SURVEY

2024. The PSC Forum: Characterizing Acute Cholangitis Experiences: Further Results from the PSC Flare or Cholangitis Attack Patient Survey

2024. Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials

2024. Caregiver-reported symptom burden and preferences for therapeutic goals in pediatric primary sclerosing cholangitis

2024. AASLD Liver Meeting Abstract and Poster: 4346: DEFINING ACUTE CHOLANGITIS AS A CLINICAL OUTCOMES ENDPOINT IN ADULTS WITH PRIMARY SCLEROSING CHOLANGITIS: RESULTS OF A MULTINATIONAL PATIENT SURVEY TO DEVELOP A PATIENT-REPORTED OUTCOMES MEASURE.

2024. AASLD Liver Meeting Abstract and Poster: 4333: UNDERSTANDING FATIGUE EXPERIENCES THROUGH QUALITATIVE INTERVIEWS WITH ADULTS LIVING WITH PRIMARY SCLEROSING CHOLANGITIS (PSC): AN ESSENTIAL FIRST STEP TOWARDS CUSTOMIZING A PSC-SPECIFIC PROMIS® MEASURE

2023. AASLD Liver Meeting Abstract and Poster: 4640-C: CAREGIVER-REPORTED SYMPTOM BURDEN AND PREFERENCES FOR THERAPEUTIC GOALS IN PEDIATRIC PRIMARY SCLEROSING CHOLANGITIS

2023. AASLD Liver Meeting Abstract and Poster: 4579-C: THE EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT MEETING FOR PRIMARY SCLEROSING CHOLANGITIS: INSIGHTS ON PATIENT INVOLVEMENT IN CLINICAL TRIALS

2023. AASLD Liver Meeting Abstract and Poster: 4577-C: SYMPTOMS OF PRIMARY SCLEROSING CHOLANGITIS (PSC) IN THE LAST MONTH: PRELIMINARY DATA FROM THE PSC-PARTNERS PATIENT REPORTED OUTCOME MEASURE PROJECT

2023. AASLD Liver Meeting Abstract and Poster: 4558-C: NETWORK ANALYSIS OF SYMPTOMS EXPERIENCED BY PATIENTS WITH PRIMARY SCLEROSING CHOLANGITIS

2023. AASLD Liver Meeting Abstract and Poster: 3784-C: CENTERING THE PATIENT VOICE IN MULTI-STAKEHOLDER ENGAGEMENT TO DEVELOP A STRATEGIC RESEARCH PLAN FOR THE PSC COMMUNITY

2021. FINDINGS FROM THE PATIENT-FOCUSED DRUG DEVELOPMENT FORUM ON PRIMARY SCLEROSING CHOLANGITIS

2019. Pregnancy Experiences in Women with Primary Sclerosing Cholangitis

2019. Potential Association of Doxycycline With the Onset of Primary Sclerosing Cholangitis: A Case Series

2019. Clinical Characteristics and Outcomes Reported by Patients with Primary Sclerosing Cholangitis Through an Online Registry

2017. Development and validation of a primary sclerosing cholangitis–specific patient‐reported outcomes instrument: The PSC PRO

2016. Medical Treatments in Patients with Primary Sclerosing Cholangitis Differ Between Europe and North America

2016. Frequency of Familial Primary Sclerosing Cholangitis (PSC) and Inflammatory Bowel Disease: Results From the PSC Partners Patient Registry

2015. Characterization Of A Patient Driven International Registry For Primary Sclerosing Cholangitis