Ongoing Research Projects.
Patient registry: launch scheduled in 2021
AIHA focus groups: the patient experience of AIH, 2020-2021
The GRACE Study at Indiana University: genetic and environmental risks of autoimmune hepatitis. Member recruitment for immune cell sample collection
Biospecimen recruitment: translational research
North American AIH Consortium (Indiana University, University of Pennsylvania, and Mayo Clinic): consortium partner.
We welcome the opportunity to partner with researchers and pharmaceutical companies that seek to discover new and better treatments for AIH and improve the quality of life for patients.
Overview of Our Membership
More than 1,800 members
Distribution and Density of AIHA Members in North America
Coffee drinking has been associated with the decreased risk of some autoimmune diseases, liver diseases, and fibrosis. Environmental factors, such as coffee consumption, are yet to be assessed among patients with autoimmune hepatitis (AIH). . .Coffee is ubiquitous, and the benefits of this beverage have been touted since scientific literature has shown numerous health benefits. Not only has coffee been linked to reduced all-cause mortality, it has also has been protective in liver disease against elevated liver tests and fibrosis progression. Further, coffee may be protective of some autoimmune diseases. Read More...
The research paradigm in the United States remains burdened by numerous obstacles impeding the progress of scientific investigation. Barriers to effective and efficient conduct of academic research include growing costs, delayed results, adequate staffing, and regulatory encumbrances. Beyond these system constraints, patient recruitment in research studies can be time intensive, costly, and limited by minimal participant diversity. The social mediasphere, an intertwining universe of online social media applications, may represent a new model in research methodology that will bridge current research challenges in all medical fields. Read More...
Research in a rare disease is challenging due to limited access to patients. However, patients with rare disease are increasingly colocated virtually online through social media outlets such as Facebook, Instagram or through traditional Web sites that promote peer-to-peer connections or nonprofit organizations dedicated to their disease. Our group in the past has successfully leveraged social media to conduct research in online cohorts of autoimmune hepatitis by deploying surveys that even included confirmation of diagnosis by procuring medical records and biosamples. In the current study, we aimed to identify the frequency of CBD use in AIH patients and assess the impact on symptoms and safety profile using two large AIH-specific social media groups. Read More...
Conventional approaches to participant recruitment are often inadequate in rare disease investigation. Social networking sites such as Facebook may provide a vehicle to circumvent common research limitations and pitfalls. We report our preliminary experience with Facebook-based methodology for participant recruitment and participation into an ongoing study of autoimmune hepatitis (AIH). The goal of our research was to conduct a pilot study to assess whether a Facebook-based methodology is capable of recruiting geographically widespread participants into AIH patient-oriented research and obtaining quality phenotypic data. Read More...
Medical knowledge, culminating from the collection and translation of patient data, is the primary objective of the clinical research paradigm. The successful conduct of this traditional model has become even more challenging with expansion of costs and a dwindling research infrastructure. Beyond systemic issues, conventional research methods are further burdened by minimal patient engagement, inadequate staffing, and geographic limitations to recruitment. Clinical research has also failed to keep pace with patient demands, and the limited scope of well-funded, disease-specific investigation has left many patients feeling disenfranchised. Social media venues may represent a viable option to surpass these current and evolving barriers when used as an adjunctive approach to traditional clinical investigation. Read More...
Concurrent autoimmune illnesses contribute to increased medical burden and reduced quality of life in patients with autoimmune hepatitis (AIH). The frequency of coexisting autoimmune conditions among North American patients with AIH and their families remains incomplete. Challenges associated with disease capture in the electronic medical record, high study costs, and geographic spread of patients are formidable barriers to understanding the extent of concurrent autoimmune conditions in these groups. Read More...
Autoimmune hepatitis (AIH) is a rare chronic progressive inflammatory disorder affecting genetically susceptible individuals in whom external environmental factors trigger a cascade of T cell mediated response. Obesity in autoimmune conditions has garnered increased interest due to its recent exponential rise. There is limited data on how non-alcoholic fatty liver disease (NAFLD), an obesity-related liver disease may affect AIH in terms of prevalence, treatment, and outcomes. Thus, the American Association for the Study of Liver Diseases have recently updated AIH guidelines to suggest screening AIH patients for metabolic syndrome, as its presence may require modification of the commonly used glucocorticoid regimen in AIH. Read More...