Disease of Impact: Sjogren's Syndrome
Aaron is software entrepreneur with 30 years of experience in database development, the last 15 focused on healthcare and medical research. He was cofounder of Recombinant Data, a software company that implemented database technologies for academic medical centers. The company experienced rapid growth from 2008 through 2012 as electronic health records were adopted across the country. The company was acquired by Deloitte Consulting in 2012 and after a 6 month transition period Aaron retired in 2013.
Aaron is best known for his work with Informatics for Integrating Biology and the Bedside, known as i2b2, an NIH funded, open-source software program that supports medical research by enabling HIPAA-compliant exploration of patient data. He has implemented i2b2 databases for research at dozens of academic medical centers around the country. He has also provided training in these technologies and has published work in the Journal of the American Medical Informatics Association (JAMIA).
In 2013, his mother was diagnosed with Sjogren’s syndrome (after 10 years with classic symptoms of this illness). He learned that it was autoimmune and learned that other people with other autoimmune illnesses have the same problem with getting diagnosed properly. He also found that statistics on autoimmune illnesses were lacking, and that autoimmune illnesses are underappreciated as a source of chronic illness. He decided to build a national registry for autoimmune illness modeled on the National Cancer Registry. He is committing 80% of his time to this project.