Clinical trial Recruiting at 12 sites Observational

Registry for genetic and metabolic liver diseases in China

Official title: A Nation-wide Hospital-based Registry:China Registry for Genetic / Metabolic Liver Diseases

Run by Beijing Friendship Hospital · NCT03131427 · Data updated 2026-11-12

This study is gathering information from patients with genetic or metabolic liver diseases in China to help improve care and support future research.

Quick facts

Study typeObservational
SexAll
Enrollment20000 (estimated)
SponsorBeijing Friendship Hospital
Academic / other
Locations12 sites (Beijing, Beijing Municipality and 11 other locations)
StatusRecruiting
StartedJune 13, 2015
Main results expectedApril 28, 2022
Study endsApril 28, 2027
Registry record updatedApril 27, 2017
Trial IDNCT03131427 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include patients diagnosed or suspected of having Wilson's disease, hereditary hemochromatosis, hereditary hyperbilirubinemias, or inherited cholestatic liver disease.

Probably not a fit

Patients who are unable or unwilling to provide informed consent will not benefit from this registry.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This registry collects data on patients diagnosed or suspected to have genetic or metabolic liver diseases, such as Wilson's disease and hereditary hemochromatosis, from various hospitals in mainland China. It records demographics, medical history, laboratory results, and treatment information while also collecting blood samples for genetic testing. Patients are followed up every six to twelve months to monitor their clinical progress and update their medical records. The aim is to create a comprehensive database that can aid in future research and improve patient care.

Why it matters

Potential benefit: If successful, this registry could enhance understanding and management of genetic and metabolic liver diseases, leading to improved patient outcomes.

How similar studies have gone: Other similar registries have shown success in improving patient management and advancing research in genetic diseases.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

Patients who were diagnosed or possibly diagnosed with Wilson's disease, hereditary hemochromatosis, hereditary hyperbilirubinemias, inherited cholestatic liver disease or other genetic/metabolic liver diseases.

Exclusion Criteria:

Patients who are unable or unwilling to provide informed consent.

Where it's running

  • Beijing Ditan Hospital
    Beijing, Beijing Municipality, China
    Recruiting
  • Beijing Anzhen Hospital, Capital Medical University
    Beijing, Beijing Municipality, China
    Recruiting
  • Peking University First Hospital
    Beijing, Beijing Municipality, China
    Recruiting
  • Beijing YouAn Hospital
    Beijing, Beijing Municipality, China
    Recruiting
  • Nanfang Hospital of Southern Medical University
    Guangzhou, Guangdong, China
    Recruiting
  • Hebei Medical University Third Hospital
    Shijiazhuang, Hebei, China
    Recruiting
Show 6 more locations
  • Henan Provincial Hospital
    Zhengzhou, Henan, China
    Recruiting
  • Zhongshan Hospital, Fudan University
    Shanghai, Shanghai Municipality, China
    Recruiting
  • Jinshan Hospital of Fudan University
    Shanghai, Shanghai Municipality, China
    Recruiting
  • West China Women's and Children's Hospital, Sichuan University
    Chengdu, Sichuan, China
    Recruiting
  • Affiliated Hospital, Logistics University of People's Armed Police Force
    Tianjin, Tianjin Municipality, China
    Recruiting
  • Xinjiang Uygur Autonomous Region Traditional Chinese Medicine Hospital
    Ürümqi, Xinjiang, China
    Recruiting

Study contacts

  • Principal investigator: Jidong Jia, Doctor — Beijing Friendship Hospital
  • Study coordinator: Jidong Jia, MD
  • Email: jia_jd@ccmu.edu.cn
  • Phone: 010-63139816

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 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.