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About Autoimmune Registry, Inc.

Autoimmune Registry, Inc., ARI, is a 501(c)(3) non-profit umbrella organization that provides a hub for research, statistics, and patient data on all autoimmune diseases.

Since 2016 we have operated a database for patients who suffer from any autoimmune disease. Our mission is to reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies. 

We also aim to become a trusted source where patients with these diseases can find credible, scientifically supported information about their diseases, promising treatments in the pipeline, and accurate prognosis insights. Whenever necessary, we will redirect patients to our patient advocacy groups for further resources and information.

Autoimmune Registry- About Us and Our People

Our Staff

Aaron Abend- Executive Director, Autoimmune Registry Inc.

Aaron Abend - Executive Director, Board Member

Aaron is an entrepreneur with 35 years of experience in software development, the last 15 focused on healthcare and medical research. He was co-founder of Recombinant Data, a software company that implemented database technologies for academic medical centers. Recombinant was acquired by Deloitte Consulting in 2012.

In 2013, his mother was diagnosed with Sjögren’s syndrome. He learned that it was autoimmune and witnessed his mother’s experience of waiting for 10 years before she was correctly diagnosed. He decided to build a registry for autoimmune illness, modeled on the National Cancer Registry, to improve diagnosis by gathering statistics and research on this important class of disease.

Aaron earned a BA from Middlebury College and an MBA from Columbia University. He has also taken courses at Stanford University’s Biomedical Informatics program.

Autoimmune Registry Director of Research

Ingrid He - Director of Research, Board Member

Ingrid previously worked as an attorney representing corporations, hospital organizations, and insurance companies in a variety of litigations, including medical malpractice and breach of contract claims. She received her JD and MBA degrees from Fordham University in 2012 and 2022, respectively.

She became a patient advocate in 2014 after being diagnosed with Sjogren’s disease. With her experience in the healthcare system as well as an undergraduate degree in mathematics, she went on to develop a symptom-tracking app for patients with Sjogren’s disease.  By joining the Autoimmune Registry, she hopes to bring the patient perspective to research projects and to develop symptom-tracking technologies that can help the research community better understand autoimmune diseases.

Reginald (Reggie) Barnes - Director of Patient Partnerships, Board Member

“Helping every person” are words that Reggie lives for. He is a survivor of a rare autoimmune disease, called anti-GAD65 autoimmune encephalitis. He also suffers from multiple comorbid autoimmune diseases. Reggie understands the real-world challenges each person has to journey through to find a diagnosis and treatment. He is also aware of the proactivity steps that all stakeholders must engage in to save a life. At the Autoimmune Registry, Reggie is establishing collaborative alliances with other patient advocacy and research groups that collectively aim to find a cure for autoimmune diseases.

Reggie earned his BS in Business Administration and BA in Philosophy from the California State University, Dominguez Hills. He has served in key leadership positions with leading for-profit corporations. He also understands the joy of turning a charitable vision into a reality.

Jeff Green - Chief Technology Officer

Jeff Green studied computer science and engineering at the University of California, Irvine. He worked for small companies and large corporations over his 35-year career doing database and software application design, healthcare data harmonization and migration, and data analytics. Jeff entered the healthcare field in 2011, joining the Northwest EHR Collaborative, Inc. (NWHER) as CTO to implement a Health Information Exchange in Montana. His published work on that project has been presented at the American Medical Informatics Association. Since then, Jeff has served as lead consultant on technical projects at Partners Healthcare in Boston (including Mass General Hospital), the University of Washington, and the Mount Sinai Medical Center in New York City. Jeff is an expert in i2b2 and Shared Health Research Informatics Network (SHRINE) which allows i2b2 systems to interoperate while protecting patient privacy.

Autoimmune Registry Chief Data Officer

Michael Kamerick - Chief Data Officer

Michael Kamerick has been on the forefront of health information and data technology for over 25 years, and he has many years of experience in the healthcare IT space, as VP of Provider Acquisition for TriNetx, Director of Research Systems and Co-Director of Biomedical Informatics at University of California, and Managing Director at ConvergeHEALTH by Deloitte.

Michael has been a leader in the movement to leverage data from Electronic Medical Record systems to bring insight and intelligence to the business of medicine and medical research. He has participated in multiple national research initiatives, including EDRN, caBIG and the CTSA. I have participated in and led teams that that have built several distributed research networks and have co-authored papers and posters on the subject.

His background includes positions in software development, technical consulting, product management, enterprise consulting, and IT management at UC Berkeley, Sun Microsystems, WebLogic, Ventaso, Watermark Venture Partners, and mVortex Partners. Michael earned his BSC in computer science from San Francisco State University.

Erica Matute-Arcos - Recruitment Coordinator

Erica is ARI’s Recruitment Coordinator, working with participants who are interested in enrolling in the clinical trials that will lead to new treatments for autoimmune disease.

Kent Larsen - Financial Consultant

Kent is ARI’s Financial Consultant, helping with our accounting and all our IRS submissions .

Peggy Collins - Social Media and Partner Liaison

Peggy helps us with our social media communications. She also serves as our Partner Liaison with the National Scleroderma Foundation

Independent Board Members

Autoimmune Registry Board Member

Amber Gilbert - Board Member

Amber has more than 15 years of experience developing strategies and programs for leading biopharmaceutical companies. In her role as Principal at Cyan Health, Amber leads a growing team of talented professionals in the development of powerful insights, strategies, and tactics that support market access for clients’ brands.

Amber has supported clients launching products for the treatment of major chronic conditions such as diabetes, including the payer launch of Invokana. Amber has also supported other healthcare companies such as WellDoc and Weight Watchers with strategic planning designed to improve payer and employer coverage of their offerings.

Prior to Cyan Health, Amber worked for Ogilvy CommonHealth, a leading advertising agency, in a variety of roles, including Chief Strategy Officer for the Payer Marketing division. Amber also spent many years working as a management consultant with inVentiv Health and Strategyx, LLC, specializing in market access. Throughout her time with these organizations, she worked both domestically and internationally with products across the life cycle on engagements ranging from organizational alignment initiatives to product launch planning and global pricing strategies. These experiences have given Amber the value of deep perspective and a broad set of skills that can be deployed to meet her clients’ most pressing market access challenges. Amber holds a BS from Cornell University and an MBA from Columbia University.

Michael Craig - Board Member

Michael is a Business Strategy and Initiative Executive at Bank of America Merrill Lynch.  He has a number of family members with various autoimmune diseases and has been an ARI board member since 2016. He holds a BS from Cornell, an MA in International Affairs from Syracuse University, and an MBA from Columbia University.

Resources

ARI is committed to transparency in its organization and operations. Below are our organizing documents.

ARI Bylaws
Provides information about the governance process used by our board to operate the organization.

 

Articles of Incorporation for ARI
Provides information about the stated purpose of the corporation as well as prohibited activities.

To read more of our policies, visit our policies page.