What question did this study set out to answer?

To develop a national PBC patient registry that collects data to identify care and treatment gaps.

The PBC Ireland patient registry: study protocol for a national platform on primary biliary cholangitis

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Observational registry collects patient-reported outcomes in PBC patients, suggesting improved care and policy involvement.

To develop a national PBC patient registry that collects data to identify care and treatment gaps.
Observational, registry-based study design
Participants must have a PBC diagnosis and be 18 or older
Collection of data via a secure web-based system
Use of PROMs for fatigue, pruritus, and quality of life
Post-completion survey to assess usability and comprehensiveness
52 participants registered, with 40 completing data collection forms
High satisfaction reported in areas like usability and privacy
Web-based PROMs effectively gathered real-world evidence from patients
System confirmed as user-friendly and comprehensive

Nesbitt et al. (2026) studied this question.

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View Full Paper

Ask AI

Bookmark

Authors

Observational registry collects patient-reported outcomes in PBC patients, suggesting improved care and policy involvement.

To develop a national PBC patient registry that collects data to identify care and treatment gaps.
Observational, registry-based study design
Participants must have a PBC diagnosis and be 18 or older
Collection of data via a secure web-based system
Use of PROMs for fatigue, pruritus, and quality of life
Post-completion survey to assess usability and comprehensiveness
52 participants registered, with 40 completing data collection forms
High satisfaction reported in areas like usability and privacy
Web-based PROMs effectively gathered real-world evidence from patients
System confirmed as user-friendly and comprehensive

Nesbitt et al. (2026) studied this question.

View Full Paper

Ask AI

Bookmark