[{"innerBlocks":[],"name":"core\/freeform","postId":1148,"blockType":{"name":"core\/freeform","keywords":[],"attributes":{"content":{"type":"string","source":"raw"},"lock":{"type":"object"}},"providesContext":[],"usesContext":[],"selectors":[],"supports":{"className":false,"customClassName":false,"reusable":false},"styles":[],"variations":[],"apiVersion":3,"title":"Classic","description":"Use the classic WordPress editor.","category":"text"},"originalContent":"The National Institutes of Health is on track to ultimately recruit a million volunteers as part of the Precision Medicine Initiative\u2019s All of Us<\/i> research program, according to NIH Director Francis Collins, MD.

\u201cThis is a remarkable program on a scale never before attempted in the United States,\u201d said Collins on Thursday during a speaker series in partnership with the National Library of Medicine. \u201cMore than 195,000 people already signed up, on the way to a million. That makes it already just about the biggest study that the National Institutes of Health has ever put on\u2014and, we\u2019re just getting started.\u201d

Collins contends that NIH is \u201con track to achieve our one million participants within a five-year period from the original launch\u2014and, I\u2019m hoping we might even be able to do it a little sooner.\u201d He pointed out that the All of Us<\/i> research program was officially launched in May 2018, less than a year ago, but a lot has already been accomplished.

Of the 195,000 Americans who have volunteered to date, Collins disclosed that so far more than 117,000 participants have provided blood and urine samples that are being sent to the Mayo Clinic\u2019s biobank in Rochester, Minn., which will store more than 35 million biospecimens and associated data for the cohort.

\u201cAs part of this study, people will be having a very detailed analysis of their DNA that\u2019s derived from their blood samples,\u201d added Collins. \u201cWe have now brought onboard three of the most advanced genome centers in the country\u2014actually in the world\u2014and they\u2019re our partners in doing this.\u201d

Also See<\/b>: NIH establishes three genome centers to support PMI cohort<\/a>

Participants in the All of Us<\/i> research program will contribute their physical, genomic and electronic health record data to help researchers make medical breakthroughs by measuring risk for a range of diseases based on environmental exposures, genetic factors and interactions between the two.

\u201cMaking their electronic health records available is a critical part of this,\u201d according to Collins.

In addition to providing blood and urine samples as well as access to their EHRs, participants\u2019 information will be collected through fitness trackers, physical measurements and surveys.

\u201cThere\u2019s a lot of new technologies that have come along, including things like wearable sensors that are keeping track of what\u2019s happening day to day\u2014which can be very valuable in trying to make this study even more powerful,\u201d noted Collins. \u201cIf you have a Fitbit, we have asked you to begin to see about ways to share that data with the study. At the moment, it\u2019s Fitbits, but other wearable devices will be coming along. All of this adds greater depth to the study.\u201d

\u201cThe opportunity to deal with very large datasets\u2014and also to develop highly secure computer systems\u2014means that this is the right moment to mount a study of this sort,\u201d added Collins. \u201cAll of the data will be anonymized before researchers get to look at it.\u201d

Collins emphasized that researchers who have access to the data through the All of Us<\/i> research program \u201chave pledged they will not try to identify individuals, and they will adhere to this very strong security and confidentiality principle.\u201d

However, an audit released last month by the Department of Health and Human Services\u2019 Office of Inspector General found that NIH does not have adequate controls in place when it comes to permitting and monitoring access to the agency\u2019s sensitive data. HHS Secretary Alex Azar was asked about the OIG report on Thursday during his testimony before the Senate Finance Committee regarding the agency\u2019s fiscal year 2020 budget.

\u201cThe OIG report found that NIH did not consider national security risk when permitting and monitoring foreign principal investigators\u2019 access to U.S. citizens\u2019 genomic data,\u201d said Sen. Chuck Grassley (R-Iowa) chairman of the Senate Finance Committee.

\u201cThe OIG further noted that NIH permitted access to genomic data to for-profit entities including companies from China, even though the FBI has identified those companies as having ties to the Chinese government,\u201d Grassley added. \u201cThe OIG also found that NIH did not verify that foreign researchers had completed information security training.\u201d

Azar responded that NIH recently established a working group to \u201caddress how to mitigate these concerns.\u201d He added that the agency is taking the issue very seriously, while acknowledging that it\u2019s an \u201cimmense\u201d challenge.
","saveContent":"The National Institutes of Health is on track to ultimately recruit a million volunteers as part of the Precision Medicine Initiative\u2019s All of Us<\/i> research program, according to NIH Director Francis Collins, MD.

\u201cThis is a remarkable program on a scale never before attempted in the United States,\u201d said Collins on Thursday during a speaker series in partnership with the National Library of Medicine. \u201cMore than 195,000 people already signed up, on the way to a million. That makes it already just about the biggest study that the National Institutes of Health has ever put on\u2014and, we\u2019re just getting started.\u201d

Collins contends that NIH is \u201con track to achieve our one million participants within a five-year period from the original launch\u2014and, I\u2019m hoping we might even be able to do it a little sooner.\u201d He pointed out that the All of Us<\/i> research program was officially launched in May 2018, less than a year ago, but a lot has already been accomplished.

Of the 195,000 Americans who have volunteered to date, Collins disclosed that so far more than 117,000 participants have provided blood and urine samples that are being sent to the Mayo Clinic\u2019s biobank in Rochester, Minn., which will store more than 35 million biospecimens and associated data for the cohort.

\u201cAs part of this study, people will be having a very detailed analysis of their DNA that\u2019s derived from their blood samples,\u201d added Collins. \u201cWe have now brought onboard three of the most advanced genome centers in the country\u2014actually in the world\u2014and they\u2019re our partners in doing this.\u201d

Also See<\/b>: NIH establishes three genome centers to support PMI cohort<\/a>

Participants in the All of Us<\/i> research program will contribute their physical, genomic and electronic health record data to help researchers make medical breakthroughs by measuring risk for a range of diseases based on environmental exposures, genetic factors and interactions between the two.

\u201cMaking their electronic health records available is a critical part of this,\u201d according to Collins.

In addition to providing blood and urine samples as well as access to their EHRs, participants\u2019 information will be collected through fitness trackers, physical measurements and surveys.

\u201cThere\u2019s a lot of new technologies that have come along, including things like wearable sensors that are keeping track of what\u2019s happening day to day\u2014which can be very valuable in trying to make this study even more powerful,\u201d noted Collins. \u201cIf you have a Fitbit, we have asked you to begin to see about ways to share that data with the study. At the moment, it\u2019s Fitbits, but other wearable devices will be coming along. All of this adds greater depth to the study.\u201d

\u201cThe opportunity to deal with very large datasets\u2014and also to develop highly secure computer systems\u2014means that this is the right moment to mount a study of this sort,\u201d added Collins. \u201cAll of the data will be anonymized before researchers get to look at it.\u201d

Collins emphasized that researchers who have access to the data through the All of Us<\/i> research program \u201chave pledged they will not try to identify individuals, and they will adhere to this very strong security and confidentiality principle.\u201d

However, an audit released last month by the Department of Health and Human Services\u2019 Office of Inspector General found that NIH does not have adequate controls in place when it comes to permitting and monitoring access to the agency\u2019s sensitive data. HHS Secretary Alex Azar was asked about the OIG report on Thursday during his testimony before the Senate Finance Committee regarding the agency\u2019s fiscal year 2020 budget.

\u201cThe OIG report found that NIH did not consider national security risk when permitting and monitoring foreign principal investigators\u2019 access to U.S. citizens\u2019 genomic data,\u201d said Sen. Chuck Grassley (R-Iowa) chairman of the Senate Finance Committee.

\u201cThe OIG further noted that NIH permitted access to genomic data to for-profit entities including companies from China, even though the FBI has identified those companies as having ties to the Chinese government,\u201d Grassley added. \u201cThe OIG also found that NIH did not verify that foreign researchers had completed information security training.\u201d

Azar responded that NIH recently established a working group to \u201caddress how to mitigate these concerns.\u201d He added that the agency is taking the issue very seriously, while acknowledging that it\u2019s an \u201cimmense\u201d challenge.
","order":0,"get_parent":{},"attributes":[],"attributesType":{"content":{"type":"string","source":"raw"},"lock":{"type":"object"}},"dynamicContent":""}]

NIH has signed up nearly 200,000 participants for PMI cohort

More for you