PBC Ireland - Patient Resources

Resources

Patient Resources (by PBC Ireland)

📝 Clinic Visit Questionnaire (pdf)
Complete the form in advance, bring it with you to your clinic visit, and hand it to your consultant.
Use it as a guide to make sure everything you’ve ticked is discussed before you leave.

📝 Blood Work Tracker (xlsx)
You may find it helpful to keep a record of your blood test results in a spreadsheet like this, especially when monitoring trends over time.
Changing the colour of any abnormal result to red (or amber for borderline values) can make it much easier to see at a glance which tests may need attention or discussion with your doctor.

📝 PBC Good Care Guide
Designed by PBC Ireland, tyhe PBC Good Care Guide explains what good medical care for Primary Biliary Cholangitis should look like for most PBC patients, from diagnosis through long-term monitoring. It helps patients understand the typical steps in PBC care, including treatment, monitoring, and symptom management.

📝 PBC Disease Models
PBC Ireland Disease Models are simple visual frameworks developed by Gerry Nesbitt to explain key aspects of Primary Biliary Cholangitis. They help illustrate what good care should look like, how disease activity can vary, and how symptoms and biological disease activity do not always align.

More resources to follow...

PBC Ireland Peer-Reviewed Publications

The PBC Ireland patient registry
Nesbitt G, Curley A. The PBC Ireland patient registry: study protocol for a national platform on primary biliary cholangitis. Therapeutic Advances in Rare Disease. 2026;7. doi:10.1177/26330040261427491

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New PBC Drugs Monitor

Investigational Therapies (in the pipeline)

There are several new drugs in early to mid-stage development for PBC. Some focus on relieving pruritus by reducing bile acid levels through inhibition of bile acid transport (IBAT). Others aim to address both cholestasis and metabolic dysfunction by targeting nuclear receptors (PPARα/γ) involved in lipid and bile acid metabolism. Additional candidates are designed to reduce liver inflammation and fibrosis, offering potential benefits in slowing disease progression.
(last checked: 2/6/2025)
• Volixibat (Mirum Pharmaceuticals): An IBAT inhibitor in Phase IIb trials. Shows strong anti-pruritic effects and bile acid reduction.
• Linerixibat (GlaxoSmithKline): An IBAT inhibitor in Phase III trials, focusing on alleviating pruritus associated with PBC.
• Saroglitazar (Zydus Lifesciences): A dual PPARα/γ agonist in Phase IIb/III trials. It targets both cholestasis and metabolic dysfunction in PBC.
• Cilofexor (Gilead Sciences): FXR agonist, Phase: II, Showed significant reductions in ALP, GGT, and CRP in patients not responding to UDCA, with a tolerable side-effect profile.
• Setanaxib (Genkyotex/Ipsen): NOX1/4 inhibitor. Phase: IIb/III. Targets liver fibrosis and inflammation, with early signs of efficacy in reducing fatigue and improving biochemical markers.