Finding genetic causes of adult-onset cholestatic liver disease

DEFINING THE GENETIC DRIVERS OF ADULT-ONSET CHOLESTATIC LIVER DISEASE

Not applicable Interventional Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico · NCT07317193

This study uses whole-genome sequencing to try to find rare genetic causes in adults with unexplained cholestatic liver disease so care can be better tailored.

Quick facts

PhaseNot applicable
Study typeInterventional
Enrollment60 (estimated)
Ages18 Years to 65 Years
SexAll
SponsorFondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico Academic / other
Locations1 site (Milan, Milano)
Trial IDNCT07317193 on ClinicalTrials.gov

What this trial studies

The project performs advanced whole-genome sequencing on adults who have persistent or atypical cholestatic liver disease, including cases with negative or no prior genetic testing. Eligible participants are identified by prolonged elevations of alkaline phosphatase or GGT, atypical features of PSC, seronegative PBC, or a family history of unexplained cholestasis. Sequencing data will be analyzed to identify rare pathogenic variants that might explain the clinical presentation. Genetic diagnoses found could inform monitoring, treatment decisions, and family counseling.

Who should consider this trial

Good fit: Ideal participants are adults over 18 with persistent unexplained elevations of ALP or GGT for at least six months, atypical PSC or seronegative PBC, or a family history of unexplained cholestasis, especially if prior genetic testing was negative or not performed.

Not a fit: Patients with a clear non-genetic cause of cholestasis (for example obstructive biliary disease, active viral hepatitis, or drug-induced liver injury) or those with an established genetic diagnosis are unlikely to benefit.

Why it matters

Potential benefit: If successful, this work could identify genetic diagnoses that enable personalized monitoring, targeted therapies, and family testing.

How similar studies have performed: Genetic testing including whole-genome sequencing has proven helpful in pediatric cholestasis and other liver diseases, but its use specifically in adult-onset cholestasis remains relatively untested.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

Cases:

* Adults, aged \> 18 years with:

  1. persistent or intermittent elevations in serum alkaline phosphatase (ALP) or gamma-glutamyltransferase (GGT) for at least six months not explained following standard diagnostic assessment adhering to the guidelines of the European Association for the Study of the Liver (EASL), or with a positive family history of unexplained cholestasis or hepato-biliary cancer, negative to previous genetic tests (targeted panel for PFIC genes or WES);
  2. primary sclerosing cholangitis (PSC) with unusual features: small-duct PSC, non-typical radiological findings according to radiological guidelines on PSC, absence of concomitant inflammatory bowel disease, negative to previous genetic tests (targeted panel for PFIC genes or WES) or who didn't perform previous genetic test;
  3. primary biliary cholangitis (PBC) without specific anti-mitochondrial antibodies, negative to previous genetic tests (targeted panel for PFIC genes or WES) or who didn't perform previous genetic test.
* Signature of informed consent

Controls:

-Blood donors (age 18-65 years) without clinical signs of liver diseases based on the collected clinical parameters: anthropometric (BMI\>18 and \<25), haematological (Hb, white blood cells, platelets within the reference range), biochemical traits (albumin, bilirubin, AST, ALT, GGT, ALP within the reference range), medical history (negative for chronic or concomitant diseases, including immunological diseases)

Exclusion Criteria:

Cases:

* Patients who do not possess the above inclusion criteria or have at least one of the following exclusion criteria:
* an already known genetic diagnosis explaining the clinical phenotype
* affected by other causes of liver disease such as viral or autoimmune hepatitis

Controls:

-Blood donors with clinical signs of liver diseases

Where this trial is running

Milan, Milano

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Cholestatic Liver DiseaseProgressive Familial Intrahepatic Cholestasis
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.