HDIN – The Hepatitis Delta International Network
Worldwide, more than 250 million people are infected with HBV, and 15-20 million of these individuals are thought to be co-infected with HDV. The prevalence of hepatitis delta varies widely throughout the world and even within different regions of a country. Hepatitis delta is a major health problem, not only because of the severity of the disease, but also due to the lack of effective antiviral treatment.
To improve the current therapeutic options, a better understanding of the pathophysiology is essential. Reliable research in this direction is only possible with large patient study groups. However, given the geographic distribution of hepatitis delta, larger patient cohorts would only be possible through multicenter collaboration.
The Hepatitis Delta International Network is coordinated by the HepNet Study-House of the German Liver Foundation and brings together scientists, clinicians and health care associated individuals from all over the world to discuss and cooperate on all topics related to hepatitis delta. Main focus of the network is the establishment of a common hepatitis delta registry.
The primary aim of the HDIN registry is to establish a large global data base of patients chronically infected with HDV to better define the course of hepatitis delta and response to antiviral therapy in the context of different HDV and HBV genotypes and diverse host genetic and environmental backgrounds. A structured eCRF optimized for hepatitis delta was implemented.
The Hepatitis Delta International Network is not a conventional register since it is not only meant to collect and manage patient information, but it also serves as source of information for both patients and physicians with the help of our specific “Patient Form”.
The HDIN Registry Protocol
Participation is open for all physicians worldwide with expertise on hepatitis delta treatment.
Patients with chronic hepatitis delta will be screened regardless of HDV or HBV genotype. Prospective and retrospective inclusion of patients is possible. There will be no limit in the number of patients recruited.
The primary objectives are:
- To characterize the morbidity and mortality of hepatitis delta patients
- To characterize the impact of therapy on the morbidity and mortality of hepatitis delta patients
Inclusion criteria of the patient registry:
- Positive HBs antigen and anti HDV for longer than 6 months.
- HDV RNA positive
- Signed informed consent or ethical approval of retrospective data entry
- Absence of any cause of relevant liver disease other than HDV (i.e. hemochromatosis, autoimmune hepatitis, alcoholic or toxic liver disease, etc.)
If you would like to contribute patients to our registry, please contact our administrative coordinator for further instructions.
The HDIN Meetings
Members and guests of the Hepatitis Delta International Network hold meetings twice a year while attending The Liver Meeting® and The International Liver Congress™ to share recent data, present studies and findings, and discuss the hottest topics on hepatitis delta. The coordinators of HDIN give updates on the current status of the HDIN registry and recent evaluations of the data.
If you are interested in participating in the network and the registry, please contact us!