09/09/2026
๐ Join the Autoimmune Hepatitis (AIH) Patient Registry
๐ฌ Help advance research in autoimmune hepatitis.
Researchers and patient advocates are working together to better understand
autoimmune hepatitis (AIH), improve quality of life, and support the development of future treatments. To help achieve these goals, we invite individuals with AIH to
participate in the AIH Patient Registry.
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Already enrolled?
If you are already participating in the AIH Patient Registry, please be sure to complete your annual AIH follow-up check-in when you receive the reminder email at the primary email address associated with your registry account.
Your yearly updates are one of the most valuable parts of the registry.
Following participants over time allows researchers to better understand how AIH changes throughout the course of the disease, how treatments perform in real-world settings, and which factors may influence long-term outcomes. Even if your health has remained stable, your continued participation provides critical information that helps advance AIH research.
โWhat is the AIH Patient Registry?
The registry collects information from individuals living with AIH, including:
โข Disease history and diagnosis
โข Current and past treatments
โข Symptoms and quality of life
โข Experiences living with AIH
Information collected through the registry helps researchers better understand AIH and identify opportunities for future studies.
๐ป What does participation involve?
Participation is entirely online and can be completed from home.
If you choose to participate:
โข You will review and complete an electronic consent form.
โข You will complete online questionnaires about your health and experiences with AIH.
โข You will provide a saliva sample. We will mail you a collection kit, and you will return the sample using the prepaid shipping materials provided.
โข You may be invited to complete follow-up surveys approximately once per year.
โ ๏ธ What are the risks?
The risks of participation are minimal and primarily involve sharing health-related
information through secure online surveys.
๐ Will my information be protected?
Yes. Information collected through the registry is stored securely and managed
according to established privacy and research standards.
Data shared with researchers will not contain information that directly identifies you.
๐ฉ Interested in participating?
To learn more, contact: [email protected]
A study coordinator will provide additional information, answer your questions, and
guide you through the enrollment process.
๐ As a thank-you for participating, eligible participants who are US residents may receive a complimentary AIHA T-shirt.
๐ Your participationโboth now and through annual follow-upโhelps researchers better understand autoimmune hepatitis over time and supports the development of future treatments for the AIH community.
