Identifying patient‐centered outcomes in progressive familial intrahepatic cholestasis: Results from IMPACT
James E. Squires, Gitta H. Lubke, Emily Ventura, Alexandra Perez, Paula M. Hertel, Emily R. Perito, Laura Bull, Melissa Kochanowsky · 2026
Read Identifying patient‐centered outcomes in progressive familial intrahepatic cholestasis: Results from IMPACT by James E. Squires, Gitta H. Lubke, Emily Ventura, Alexandra Perez, Paula M. Hertel, Emily R. Perito, Laura Bull, Melissa Kochanowsky (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13446603.txt.
Description
James Squires and seven co-authors report a 2026 project on a rare inherited liver disease of children, shortened to PFIC. Care for this disease varies a lot because proof is thin, and families had no clear way to weigh in on research aims. The project, IMPACT, spent two years building the skill and tools for patient-centered studies.
Six learning modules taught families and clinicians how such studies work and drew out their research wishes. Attendance ran from sixteen to thirty-one family members per module, with a handful of clinicians. A dozen group talks added depth. The pooled input built a web tool that lays out treatments in plain words, enriched by patient stories. The authors present the project as a base for research that starts from what families value.
Catalog record
| CREATOR | James E. Squires, Gitta H. Lubke, Emily Ventura, Alexandra Perez, Paula M. Hertel, Emily R. Perito, Laura Bull, Melissa Kochanowsky |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 41 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |