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.

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

New PBC Drugs Monitor

(last checked: 25/5/2025)
Elafibranor (Iqirvo®) : Available ❌ | HSE HT Approval ❌ | NCPE (HTA ID: 25005)⌛ | IQIRVO (Ipsen) | EMA Approval ✅ | ELATIVE® Trial
Seladelpar (Lyvdelzi®) : Available ❌ | HSE HT Approval ❌ | NCPE (HTA ID: N)❌ | Lyvdelzi® (Gilead) | EMA Approval ✅ | ASSURE Trial, RESPONSE Trial

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.

Tips for living with PBC

Primary Biliary Cholangitis (Irish Liver Foundation)
Living with primary biliary cholangitis (British Liver Trust)
Primary biliary cholangitis (PBC) - Living with your diagnosis (Canadian PBC Society)
Primary biliary cholangitis: Lifestyle do's and don'ts (Mayo Clinic)
Primary Biliary Cholangitis (PBC): Living With This Chronic Disease (Cleveland Clinic)

Diet and wellness tips

The PBC Diet: What to Eat, What to Avoid (American Liver Foudation)
Using Food To Manage Primary Biliary Cholangitis (Cleveland Clinic)
Primary biliary cholangitis: Your guide to diet and nutrition (Mayo Clinic)
Health Eating (Canadian PBC Society)

Useful Websites (Irish)

Beaumont Hospital (Hepatology Dept.)
Irish Liver Foundation
Mater Hospital (Centre for Liver Disease)
St. James' (Hepatology Centre)
St. Vincent's (Hepatology Dept.)
Liver Ireland Support Network (LISN)

Useful Websites (International)

PBC Foundation (UK)
PBCers (USA)
American Liver Foundation (USA)
Canadian PBC Society (Canada)
Cleveland Clinic (USA)

PBC in the News (The latest 5 articles from Google News)

16/03/2026 The secretory protein, CLCF1, improves cholestatic liver disease by inhibiting hepatic bile acid synthesis and promoting bile acid excretion - Nature

12/03/2026 Former News 12 reporter Amy McGorry searching for living liver donor - News12 | Long Island

10/03/2026 AIFA approves reimbursement for seladelpar for primary biliary cholangitis - lamilano.it

09/03/2026 Italy's Alfasigma pens $690M deal for GSK itching drug awaiting FDA approval decision - Fierce Biotech

09/03/2026 GSK licenses liver disease drug to Italy's Alfasigma for up to $690 million - Reuters

See All PBC in the News

Guidelines

Primary biliary cholangitis (PBC) - Living with your diagnosis (Canadian PBC Society)
Diagnosis and Treatment of Primary Biliary Cholangitis: A Patient‐Friendly Summary of the 2018 AASLD Practice Guidance
PBC primary biliary cholangitis treatment and management guidelines (the British Society of Gastroenterology/UK)
EASL Clinical Practice Guidelines: The Diagnosis and management of patients with Primary Biliary Cholangitis (Lay terms)
EASL Clinical Practice Guidelines: The Diagnosis and management of patients with Primary Biliary Cholangitis (Journal of Hepatology)

Publications (The latest 5 articles from PubMed)

Csősz J, et al. 2026. [Bullous pemphigoid and primary biliary cholangitis, a rare association with therapeutic challenge]. Orv Hetil (Mar 2026)

Sierra L, et al. 2026. Liver transplant outcomes in primary biliary cholangitis and metabolic dysfunction-associated steatotic liver disease overlap. Ann Hepatol (Mar 2026)

Liu Y, et al. 2025. Risk factors for mortality in patients with primary biliary cholangitis: a nomogram to predict 5-year survival. Front Gastroenterol (Lausanne) (2025)

Li Y, et al. 2026. Integrative Mendelian Randomization and Experimental Validation Unveil Novel Druggable Targets in Primary Biliary Cholangitis. Eur J Pharmacol (Mar 2026)

Drazilova S, et al. 2026. Metabolic syndrome and its individual components but not MASLD are associated with advanced fibrosis in primary biliary cholangitis. Therap Adv Gastroenterol (2026)

See 100 Publications

Media

Press Contact: Gerry Nesbitt, gerry@PBCireland.org

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