SAN FRANCISCO, (Calif.) (PRWEB) October 09, 2017
Precise.ly, Inc. has been selected to be the patient portal in an NIH-funded, multi-center study focused on the study of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The funding, totaling over $40 million, extends over five years and represents the first major research support for a condition that affects millions of Americans.
The National Institutes of Health has awarded funding to three ME/CFS Collaborative Research Centers (CRCs) including the Bateman Horne Center, directed by Lucinda Bateman, M..D and Suzanne Vernon, Ph.D., The Jackson Laboratory, led by Derya Unutmaz, M.D., Columbia University and Cornell.
It’s predicted as many as 2.5 million Americans have ME/CFS, a debilitating disease characterized by extreme fatigue after exertion that is not relieved by rest, and other symptoms, including cognitive dysfunction, and muscle and joint pain.
"ME/CFS is unique to each person, from what caused their disease to the array of symptoms. Despite this we’ve put one ‘label’ on it. This has hindered our ability to diagnose and treat it effectively. We need patients to help us identify these unique characteristics of ME/CFS. Precise.ly puts patients at the center of this fundamental first step for a deeper understanding of this disease,” said Dr. Vernon.
Precise.ly, Inc., a web and mobile-based personal data tracking platform, founded by Linda Avey who also co-founded the personal genetics company 23andMe, will be used in the study as the patient portal. It will allow patients to track symptoms, treatments, diet, etc., according to researcher-designed protocols.
“We won’t achieve truly personalized health strategies without the voices of patients,” said Avey. “Our mission is to provide a channel for that invaluable insight.”
In July Precise.ly announced a partnership with Helix, the first online marketplace for DNA-powered products. Precise.ly’s first app will be focused on ME/CFS.
Precise.ly is a personal data tracking and integrating platform, comprised of web and app-based tools designed to streamline the importing of data from wearables, genome sequencing, environmental monitors, and the diversity of dynamically tracked events and activities. Users and researchers can create group tracking protocols, with consented data-sharing options. Its mission is to help individuals achieve precision health through personal data.