Cystic Fibrosis Related Hepatobiliary Involvement

About the Working Group

The Cystic Fibrosis Related Hepatobiliary Involvement (CFHBI) Working Group brings together clinicians, researchers and healthcare professionals with expertise in cystic fibrosis, hepatology, paediatric gastroenterology, liver disease, patient-reported outcomes and registry development.

Cystic fibrosis is a multisystem genetic condition. Hepatobiliary involvement in people with cystic fibrosis can include abnormal liver enzymes, biliary changes, steatosis, fibrosis, cirrhosis, portal hypertension and other liver or biliary tract complications. Because the manifestations are diverse and may change over time, structured surveillance, specialist input and collaboration between cystic fibrosis and liver teams are important.

The Working Group aims to improve knowledge, diagnosis, monitoring, patient-reported outcome measurement, registry development, patient information and education for people with cystic fibrosis and hepatobiliary involvement.

Get Involved

Clinicians, researchers, cystic fibrosis specialists, hepatologists, paediatric gastroenterologists, nurses, allied healthcare professionals, patient representatives and patient organisations interested in CFHBI are welcome to become involved in the Working Group.

The group works on surveys, registry development, patient-reported outcomes, patient pathways, leaflets, education and collaborative projects to improve care for people with cystic fibrosis and hepatobiliary involvement.

For more information or to join the Working Group, please contact the ERN RARE-LIVER Coordination Office.

Working Group interest form:
https://ec.europa.eu/eusurvey/runner/ERN_LIVER_WorkingGroups