Gemini
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Seven hundred ME/CFS patients have enrolled to date in NIH's "All of Us" Precision Medicine Research Study according to information posted on NIH's "Open Access" Research Hub this month.
The study's goal is to enroll one million or more U.S. participants over the next 5-6 years focusing on those understudied in the past collecting genetic data, biological samples, Electronic Health Records, survey data and much more for each participant over time. Big Data tools/techniques will be used to analyze the data hopefully leading to new discoveries.
In 2015 President Obama called for a nationwide "Precision Medicine Initiative"; $215 million was allocated to get it started. One year ago the "All of Us" study was launched as part of the Initiative with 230,000 people in total enrolled to date.
A Special 1 1/2 hour videocast was made May 6, 2019 hosted by Dr. Francis Collins,
NIH Director, to celebrate the on-going progress and plans for the "All of Us" study. It's worth a watch:
https://videocast.nih.gov/summary.asp?Live=31677&bhcp=1
NIH's "Open Access" Research Hub has a "Search" feature for browsing the survey data. Enter "Chronic Fatigue Syndrome," or the name of any condition, and data collected is displayed. For example, for "Multiple Sclerosis", it shows 320 patients enrolled plus additional data collected. This openness is a huge and welcome change to research business as usual for sure!
https://researchallofus.org
Developers of the user interface and data platform are requesting user feedback and suggestions for improvements which can be submitted to: support@researchallofus.org
The study's goal is to enroll one million or more U.S. participants over the next 5-6 years focusing on those understudied in the past collecting genetic data, biological samples, Electronic Health Records, survey data and much more for each participant over time. Big Data tools/techniques will be used to analyze the data hopefully leading to new discoveries.
In 2015 President Obama called for a nationwide "Precision Medicine Initiative"; $215 million was allocated to get it started. One year ago the "All of Us" study was launched as part of the Initiative with 230,000 people in total enrolled to date.
A Special 1 1/2 hour videocast was made May 6, 2019 hosted by Dr. Francis Collins,
NIH Director, to celebrate the on-going progress and plans for the "All of Us" study. It's worth a watch:
https://videocast.nih.gov/summary.asp?Live=31677&bhcp=1
NIH's "Open Access" Research Hub has a "Search" feature for browsing the survey data. Enter "Chronic Fatigue Syndrome," or the name of any condition, and data collected is displayed. For example, for "Multiple Sclerosis", it shows 320 patients enrolled plus additional data collected. This openness is a huge and welcome change to research business as usual for sure!
https://researchallofus.org
Developers of the user interface and data platform are requesting user feedback and suggestions for improvements which can be submitted to: support@researchallofus.org
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