YOU + M.E.
You + M.E. collects health information from people living with ME/CFS and controls. The registry platform includes a web-based User Portal that allows for easy data entry, while protecting participant privacy. After a person with ME/ CFS or someone without the disease (a control) registers on the website, they can complete surveys that capture their health history, quality of life, other diagnoses, treatments and outcomes. And because it’s important to track symptoms as they fluctuate over time, we’ve also built a mobile app to track symptoms, life events and activity levels (you can learn more about that on page 3).
YOU + YOUR DATA
We encrypt all participant data and store it in a secure database managed by Solve M.E. research staff who are certified in Human Subjects Research. Personal identifiers (i.e. names and other identifying information) are removed and the “de-identified” health information is made available on a secure platform for research. Researchers who want to analyze the Registry data are vetted by the You + M.E. Innovation Council, a group of ME/CFS, research, and data experts. We will never sell, rent, or lease any information you provide us.
Alongside your health data, biological samples are critical for biomedical research. So, You + M.E. is building a repository of samples from people with ME/CFS and controls. We are planning for a collection process that will allow a large number of people to participate, even from home – more on this soon!
(page 3 of 5)