AIHA Patient Registry

C
Craig Lammert, MD

Primary Investigator

Enrolling By Invitation
100 years and younger
All
Phase N/A
100 participants needed
2 Locations

Overview

WHY IS THIS STUDY BEING DONE?
Autoimmune hepatitis (AIH) is liver inflammation that occurs when the body’s immune system attacks liver cells. It is caused by an overactive immune system, and it is unknown why this happens. The Autoimmune Hepatitis Association (AIHA) is a not-for-profit organization seeking to develop a patient registry for people who are affected by autoimmune hepatitis to begin to characterize this poorly understood disease. 

Description

WHAT WILL HAPPEN DURING THE STUDY?
This is a patient registry study, which means that information is collected about and from participants through questionnaires that request demographic and health-related data, such as diagnosis details, medications, treatments, and liver biopsy results. This information is put into a secure database. 
Participants will be asked for a list of the current and past medications used in the treatment of their AIH and other medications currently used for other conditions. In the event they are unclear about their medications, they agree to allow the AIHA to obtain a list of current medications from their pharmacy (ies).  Participants will complete several health-related quality of life surveys at regular intervals. They will be asked to provide about 5mL of saliva by spitting into a tube. Finally, they agree to allow the AIHA to submit a physician certification letter to their treating providers for certification of their disease process.  
The information collected in this study will stay in the database indefinitely unless they tell us to remove it.  Several times each year they will receive a link via email asking them to complete one or more of the questionnaires.

Eligibility

You may be eligible for this study if you meet the following criteria:

  • Conditions:
    AIH, Auto-Immune Hepatitis
  • Age: - 100 Years
  • Gender: All

Inclusion Criteria:
  • People of all ages with confirmed autoimmune hepatitis will be included in this study

Updated on 15 May 2024. Study ID: 10861, GI-IIR-AIHA-REGISTRY
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