Registry for genetic and metabolic liver diseases in China
A Nation-wide Hospital-based Registry:China Registry for Genetic / Metabolic Liver Diseases
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 type | Observational |
|---|---|
| Enrollment | 20000 (estimated) |
| Sex | All |
| Sponsor | Beijing Friendship Hospital Academic / other |
| Locations | 12 sites (Beijing, Beijing Municipality and 11 other locations) |
| Trial ID | NCT03131427 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include patients diagnosed or suspected of having Wilson's disease, hereditary hemochromatosis, hereditary hyperbilirubinemias, or inherited cholestatic liver disease.
Not a fit: Patients who are unable or unwilling to provide informed consent will not benefit from this registry.
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 performed: Other similar registries have shown success in improving patient management and advancing research in genetic diseases.
Eligibility criteria
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 this trial is running
Beijing, Beijing Municipality and 11 other locations
- 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)
- 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 participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.