All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S. The program focuses on Precision Medicine, which means (in a severely condensed definition), not all people are created the same, so why should the approach to our health be the same?
Why is that important to dysautonomia patients? Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia? Is it a primary disorder or secondary to MS or another illness? Are you a man or a woman? What age are you? All of these things impact the way dysautonomia effects us and how we are treated. Yet, most medical treatments are based on the average response the average amount of people have to the average amount of symptoms. Precision medicine seeks to change that by having enough data stored to allow physicians and researchers to gather very specific information from people with very specific criteria. So, if a doctor is treating a man in his 70's with dysautonomia as a secondary illness to Parkinson's disease, the treatment plan won't be based on data derived from a study that was collected from 25 - 35 y.o. women with POTS contracted after flu, mono, and other viral illnesses.
To join All of Us and to find out more about the program, please visit their site https://www.joinallofus.org/en or contact DINET at firstname.lastname@example.org if you have questions about DINET's involvement.
Edited by edriscoll