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Follows children with fatty liver disease across European centres over time

Records the long-term course of fatty liver disease in children under 18.

Key facts

Who runs it
Cambridge University Hospitals NHS Foundation Trust
Where
Birmingham and Cambridge, United KingdomSee the 2 sitesAlso in 1 other country, 1 site
Trial code
Registry title
European Paediatric Non-Alcoholic Fatty Liver Disease Registry (EU-PNAFLD)
Status
Recruiting
People taking part
2,000 people, planned
Started
14 Nov 2017
Expected to end
Nov 2047
Type of study
Observational
Record updated
4 March 2022

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The registry is looking for children whose non-alcoholic fatty liver disease (NAFLD) was diagnosed before the age of 18. It follows them over time.

Age
Diagnosed under 18 years of age; maximum age 18 Years
Sex
Boys and girls can both join
Disease stage
Any stage of NAFLD: simple fatty liver, fatty liver with abnormal liver blood tests (transaminases), NASH with or without scarring (fibrosis) or cirrhosis
Biomarker or test result
Fat in the liver seen on imaging (for example increased echogenicity on ultrasound), with other causes ruled out by tests. A liver biopsy (histology) may also be used.

Main reasons for not taking part

  • Fatty liver caused by another disease (for example glycogen storage disease, Wilson disease, viral hepatitis, autoimmune hepatitis, type 1 diabetes mellitus)
  • Fatty liver caused by drugs
  • Fatty liver after a transplant
  • More than 20g/day of ethanol (alcohol) intake

The registry criteria, word for word

Show all 6 criteriaShow less

Who can take part

  • Diagnosis made under 18 years of age
  • Diagnosis of NAFLD spectrum disease (simple steatosis (NAFL), steatosis with abnormal transaminases, NASH ± fibrosis or cirrhosis)
  • Diagnosis established by:; Radiological evidence of hepatic steatosis (e.g. increased hepatic echogenicity on ultrasound), with; Exclusion of secondary causes (negative serological liver screen for HBV/HCV, caeruloplasmin >0.20g/L, no history of excess alcohol consumption, no evidence of iron overload, and no clinically significant alpha-1 antitrypsin (A1AT) phenotype (i.e. SZ, ZZ, SS), with or without; Histology (>5% steatosis and histology consistent with paediatric NAFLD)

Who cannot take part

  • Post-transplant fatty liver
  • Secondary fatty liver disease (e.g. glycogen storage diseases, Wilson disease, viral hepatitis, drug-related, autoimmune hepatitis, type 1 diabetes mellitus)
  • >20g/day ethanol intake

Where in United Kingdom

Also in 1 other country, 1 site

  • Birmingham Children's HospitalBirmingham, United KingdomContact: Indra van MourikTaking people
  • Addenbrooke's HospitalCambridge, United KingdomContact: Jake P MannTaking people

About the trial

What the trial wants to find out

The EU-PNAFLD (The European Paediatric NALFD Registry) will be a network composed of European centres involved in the care of children with NAFLD, and will include Hepatologists, Endocrinologists, and Scientists, supported by relevant international specialists. This collaboration will build on existing infrastructure (local databases and bio-repositories) and will align with the adult European NAFLD Registry ("EPoS", Elucidating Pathways of Steatohepatitis study) to allow long-term follow-up supported by translational studies. Through an international, well-characterised large-scale cohort, we hope to: facilitate multi-centre clinical trials; extend our understanding of the key disease mechanisms of NAFLD; and establish the natural history of paediatric NAFLD.

The group in the trial

  • Non-alcoholic fatty liver disease patients

    Children (\<18 years) with a diagnosis of NAFLD with radiological demonstration of increased liver fat and exclusion of other causes.

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
The European Paediatric Non-alcoholic Fatty Liver Disease Registry (EU-PNAFLD): a Prospective, Longitudinal Follow-up of Children With Non-alcoholic Fatty Liver Disease
Plain-language title
Follows children with fatty liver disease across European centres over timeGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
4 March 2022