niman Posted May 6, 2018 Report Share Posted May 6, 2018 NIH launches "All of Us" program to enroll one million diverse US citizens including under-represented populations to create personalized medical applications and interventions. https://www.nih.gov/news-events/news-releases/nih-announces-national-enrollment-date-all-us-research-program-advance-precision-medicine Link to comment Share on other sites More sharing options...
niman Posted May 6, 2018 Author Report Share Posted May 6, 2018 Tuesday, May 1, 2018 NIH announces national enrollment date for All of Us Research Program to advance precision medicine Events planned across the country to engage diverse communities. The All of Us Research Program aims to engage a diverse community of participants from across the United States. NIH On May 6, the National Institutes of Health will open national enrollment for the All of Us Research Program(link is external), a momentous effort to advance individualized prevention, treatment and care for people of all backgrounds. People ages 18 and older, regardless of health status, will be able to enroll. The official launch date will be marked by community events(link is external) in seven cities across the country as well as an online event. Volunteers will join more than 25,000 participants already enrolled in All of Us as part of a year-long beta test to prepare for the program’s national launch. The overall aim is to enroll 1 million or more volunteers and oversample communities that have been underrepresented in research to make the program the largest, most diverse resource of its kind. “All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine,” Health and Human Services Secretary Alex Azar said. “NIH’s unprecedented effort will lay the scientific foundation for a new era of personalized, highly effective health care. We look forward to working with people of all backgrounds to take this major step forward for our nation’s health.” Precision medicine is an emerging approach to disease treatment and prevention that considers differences in people’s lifestyles, environments and biological makeup, including genes. With eyeglasses and hearing aids, we have long had customized solutions to individual needs. More recently, treating certain types of cancer is now possible with therapies targeted to patients’ DNA. Still, there are many unanswered questions leaving individuals, their families, their communities and the health care community without good options. “The All of Us Research Program is an opportunity for individuals from all walks of life to be represented in research and pioneer the next era of medicine,” said NIH Director Francis S. Collins, M.D., Ph.D. “The time is now to transform how we conduct research — with participants as partners — to shed new light on how to stay healthy and manage disease in more personalized ways. This is what we can accomplish through All of Us.” By partnering with 1 million diverse people who share information about themselves over many years, the All of UsResearch Program will enable research to more precisely prevent and treat a variety of health conditions. “All of us are unique, but today we live mostly in an era of ‘one-size-fits-all’ medicine,” said Eric Dishman, director of the All of Us Research Program. “I’m alive today because of precision medicine and I think everyone deserves that same opportunity no matter the color of your skin, your economic status, your age or your sex or gender. In other words, it will truly take all of us.” All of Us seeks to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals and responsible return of research information. These efforts include building trust among populations historically underrepresented in research. Participants will be able to access their own health information, summary data about the entire participant community and information about studies and findings that come from All of Us. “Building a diverse participant community will be vital to the success of All of Us, so we can address the many pressing health conditions that disproportionately affect underrepresented communities,” said Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program. “The All of Us Research Program has the potential to help researchers better understand and begin chipping away at health disparities so that everyone can benefit from better health, better health care and exciting new breakthroughs.” Participants are asked to share different types of health and lifestyle information, including online surveys and data from electronic health records (EHRs), which will continue to be collected over the course of the program. The surveys will cover a range of topics to learn more about participants’ overall health and habits and where they live and work. The EHR data will offer useful information related to medical histories, side effects and treatment effectiveness. At different times over the coming months and years, some participants will be asked to visit a local partner site to provide blood and urine samples and to have basic physical measurements taken, such as height and weight. To ensure that the program gathers information from all types of people, especially those who have been underrepresented in research, not everyone will be asked to give physical measures and samples. In the future, participants may be invited to share data through wearable devices and to join follow-up research studies, including clinical trials. NIH has funded more than 100 organizations(link is external) from community groups to health centers, academic medical centers and private companies to carry out the program. These organizations have collaborated to develop the program’s protocol and technology systems, to engage diverse communities, to enroll participants and to securely gather and store participants’ information and biological samples for use in research. In future phases of the program, children will be able to enroll and the program will add more data types, such as genetic data. In addition, data from the program will be broadly accessible for research purposes. Ultimately, the All of Us Research Program will be a rich and open data resource for traditional academic researchers as well as citizen scientists — and everyone in between. Community-based launch events On the program’s May 6 launch date, the All of Us Research Program will host special events(link is external) in diverse communities around the country, including: Birmingham, Alabama Chicago Detroit Kansas City, Missouri Nashville, Tennessee New York City Pasco, Washington People also may take part in social media activities (#JoinAllofUs) or tune in at https://Launch.JoinAllofUs.org(link is external) to watch speakers across the country talk about precision medicine and the power of volunteering for research. To learn more about the program and how to join, please visit www.JoinAllofUs.org(link is external). “All of Us” is a registered service mark of the U.S. Department of Health & Human Services (HHS). Additional Media Resources: What partners are saying about the All of Us Research Program Multimedia: Sound Bites, Images, B-Roll and Videos All of Us Research Program backgrounder All of Us news release – Spanish About the All of Us Research Program: The mission of the All of Us Research Program is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. The program will partner with one million or more people across the United States to build the most diverse biomedical data resource of its kind, to help researchers gain better insights into the biological, environmental, and behavioral factors that influence health. For more information, visit www.JoinAllofUs.org(link is external) and www.allofus.nih.gov. About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov. NIH…Turning Discovery Into Health® ### https://www.nih.gov/news-events/news-releases/nih-announces-national-enrollment-date-all-us-research-program-advance-precision-medicine Link to comment Share on other sites More sharing options...
niman Posted May 6, 2018 Author Report Share Posted May 6, 2018 NIH seeks health data of 1 million people, with genetic privacy suddenly an issue 4:38 NIH Director Francis Collins describes 'All of Us' research program (Washington Post Live) By Lenny Bernstein May 1 Email the author The National Institutes of Health on Tuesday announced the launch of its attempt to enroll 1 million people in a landmark research effort aimed at developing “personalized” methods of prevention, treatment and care for a wide variety of diseases. The “All of Us” recruitment effort begins Sunday with community events in seven sites around the country, where people will be encouraged to sign up for the mammoth research project. Its goal is to supplement and in some cases replace the need to repeatedly recruit human subjects for research by providing a huge database of health and lifestyle information for scientists to plumb. The effort comes during a time of intense interest in data privacy. Authorities recently revealed that they had used DNA retrieved from a crime scene and GEDmatch, a website of genetic information, to find and arrest the man suspected to be the Golden State Killer, who terrorized Californians with a series of rapes and homicides in the 1970s and 1980s. But NIH Director Francis Collins and the project’s director, Eric Dishman, said volunteers’ personal data will be carefully shielded. They noted that Congress expanded protections for federally funded research in the two-year-old 21st Century Cures Act, with an eye on this type of project. They said the information is off limits to subpoenas and search warrants via “certificates of confidentiality” given to each subject. The rules protect researchers from being forced to release identifying information in judicial proceedings. “This is something we thought about,” Collins said. “We knew this was going to be an issue in getting people comfortable.” Tiffany Li, a lawyer and resident fellow at Yale Law School’s Information Society Project, said she is cautious about claims that any database can be completely shielded from access by law enforcement. She noted provisions of the USA Patriot Act that allow access to some health information in intelligence matters. “I would argue that there probably is some way to access the data,” Li said. Additional privacy protections included inviting hackers to try to breach the database where the information will be stored, Dishman said, although he acknowledged that no database is 100 percent safe from intrusion. Personalized medicine, also known as “precision medicine,” is a relatively new approach to treatment that uses genetic and other information to develop therapies targeted at individuals rather than groups of people. It has been most helpful so far in treating some cancers, because gene sequencing has allowed scientists to develop treatments based on genetic mutations found in tumor cells rather than on the part of the body where tumors emerge. Dishman said he is alive today because such an effort saved him from a rare form of kidney cancer. Collins and others have long theorized that there are many more applications for the approach. After President Barack Obama announced the initiative in his 2015 State of the Union address, NIH began testing the program in 2016. In the test phase of what Collins said is “among the most ambitious research efforts” ever undertaken, NIH recruited 45,000 people, 27,000 of whom completed all the surveys, supplied information such as height and weight, and gave blood and urine samples. That total is short of the 79,000 Collins said NIH hoped to recruit in 2016. The project leaders say they hope to reach its goal of 1 million enrolled in five or six years. Information culled from the project will be available at three levels: some to the general public, some under more tightly controlled circumstances to researchers because of the risk of identifying people participating in the trial, and the rest under the tightest control because of that risk. Participants in the study will have access to their information at all times. Organizers are recruiting only adults but hope to include children later. The officials who briefed reporters Tuesday emphasized the goal of including people from varying races, ethnic groups, education levels and socioeconomic groups, as well as people with physical and mental disabilities and differing access to care. Dara Richardson-Heron, the project’s chief engagement officer, called the study a rare opportunity to address the historical disparity in care between whites and racial minorities, as well as a chance to bring underrepresented groups into clinical research, where subjects have long been mostly white and male. Read more The Health 202: NIH wants 1 million to sign up for new pool of gene data What is “personalized medicine”? To find alleged Golden State Killer, authorities turned to genetic data 26 Comments https://www.washingtonpost.com/national/health-science/nih-seeks-health-data-of-1-million-people-with-genetic-privacy-suddenly-an-issue/2018/05/01/cb38a588-4d4b-11e8-b725-92c89fe3ca4c_story.html?noredirect=on&utm_term=.0752054bc4c5 Link to comment Share on other sites More sharing options...
The National Institutes of Health on Tuesday announced the launch of its attempt to enroll 1 million people in a landmark research effort aimed at developing “personalized” methods of prevention, treatment and care for a wide variety of diseases. The “All of Us” recruitment effort begins Sunday with community events in seven sites around the country, where people will be encouraged to sign up for the mammoth research project. Its goal is to supplement and in some cases replace the need to repeatedly recruit human subjects for research by providing a huge database of health and lifestyle information for scientists to plumb. The effort comes during a time of intense interest in data privacy. Authorities recently revealed that they had used DNA retrieved from a crime scene and GEDmatch, a website of genetic information, to find and arrest the man suspected to be the Golden State Killer, who terrorized Californians with a series of rapes and homicides in the 1970s and 1980s. But NIH Director Francis Collins and the project’s director, Eric Dishman, said volunteers’ personal data will be carefully shielded. They noted that Congress expanded protections for federally funded research in the two-year-old 21st Century Cures Act, with an eye on this type of project. They said the information is off limits to subpoenas and search warrants via “certificates of confidentiality” given to each subject. The rules protect researchers from being forced to release identifying information in judicial proceedings. “This is something we thought about,” Collins said. “We knew this was going to be an issue in getting people comfortable.” Tiffany Li, a lawyer and resident fellow at Yale Law School’s Information Society Project, said she is cautious about claims that any database can be completely shielded from access by law enforcement. She noted provisions of the USA Patriot Act that allow access to some health information in intelligence matters. “I would argue that there probably is some way to access the data,” Li said. Additional privacy protections included inviting hackers to try to breach the database where the information will be stored, Dishman said, although he acknowledged that no database is 100 percent safe from intrusion. Personalized medicine, also known as “precision medicine,” is a relatively new approach to treatment that uses genetic and other information to develop therapies targeted at individuals rather than groups of people. It has been most helpful so far in treating some cancers, because gene sequencing has allowed scientists to develop treatments based on genetic mutations found in tumor cells rather than on the part of the body where tumors emerge. Dishman said he is alive today because such an effort saved him from a rare form of kidney cancer. Collins and others have long theorized that there are many more applications for the approach. After President Barack Obama announced the initiative in his 2015 State of the Union address, NIH began testing the program in 2016. In the test phase of what Collins said is “among the most ambitious research efforts” ever undertaken, NIH recruited 45,000 people, 27,000 of whom completed all the surveys, supplied information such as height and weight, and gave blood and urine samples. That total is short of the 79,000 Collins said NIH hoped to recruit in 2016. The project leaders say they hope to reach its goal of 1 million enrolled in five or six years. Information culled from the project will be available at three levels: some to the general public, some under more tightly controlled circumstances to researchers because of the risk of identifying people participating in the trial, and the rest under the tightest control because of that risk. Participants in the study will have access to their information at all times. Organizers are recruiting only adults but hope to include children later. The officials who briefed reporters Tuesday emphasized the goal of including people from varying races, ethnic groups, education levels and socioeconomic groups, as well as people with physical and mental disabilities and differing access to care. Dara Richardson-Heron, the project’s chief engagement officer, called the study a rare opportunity to address the historical disparity in care between whites and racial minorities, as well as a chance to bring underrepresented groups into clinical research, where subjects have long been mostly white and male. Read more The Health 202: NIH wants 1 million to sign up for new pool of gene data What is “personalized medicine”? To find alleged Golden State Killer, authorities turned to genetic data
niman Posted December 25, 2018 Author Report Share Posted December 25, 2018 Tonight 10 PM ET Henry NimanThe NIH 'All Of Us' Genome Program Ready To Blast Off Link to comment Share on other sites More sharing options...
niman Posted December 25, 2018 Author Report Share Posted December 25, 2018 1 minute ago, niman said: Tonight 10 PM ET Henry NimanThe NIH 'All Of Us' Genome Program Ready To Blast Off https://www.renseradio.com/listenlive.htm Link to comment Share on other sites More sharing options...
niman Posted December 25, 2018 Author Report Share Posted December 25, 2018 (edited) Illumina Furnishes Genotyping Array, NovaSeq 6000 to NIH's All of Us DECEMBER 7, 2018 Illumina said it will provide a new high-density genotyping array and its NovaSeq 6000 Sequencing Platform (pictured) to the NIH’s All of Us Research Program, for use by the three genome centers that were awarded a total $28.6 million to generate and analyze genetic data for the research cohort piece of the Precision Medicine Initiative (PMI) designed to glean health and wellness data from 1 million or more Americans. [Illumina] Illumina said it will provide a new high-density genotyping array at no charge to the NIH’s All of Us Research Program. RELATED CONTENT The sequencing giant’s Infinium Global Diversity Array will enable the processing of up to 1 million samples by the three genome centers that were awarded a total $28.6 million from All of Us in September, Illumina said. All of Us is the research cohort piece of the Precision Medicine Initiative (PMI) designed to glean health and wellness data from 1 million or more Americans. “This contribution to the selected All of Us Genome Centers will allow the program to accelerate the unprecedented effort to complete genotyping and sequencing for all 1 million or more people who participate in the program,” NIH Director Francis S. Collins, MD, PhD, said in a statement. The new array will be a high-density chip that according to Illumina has been designed to enable achievement of the primary genotyping-based goals of the project. Those goals include unparalleled coverage of a highly diverse cohort and the ability to return results to participants such as those indicated by the American College of Medical Genetics and Genomics’ ACMG-59 Gene List—the set of 59 genes known to be associated with risk of diseases amenable to prevention or early diagnosis—and key pharmacogenomic variants. Some of these genes are associated with potentially life-threatening health conditions, ranging from familial hypercholesterolemia, to breast and ovarian cancer. The array will become commercially available for others to use in mid-2019. In addition to the new genotyping array, the genome centers will use Illumina’s NovaSeq 6000 Sequencing Platform to conduct whole genome sequencing for the All of Us Research Program. ‘Landmark Initiative’ “This landmark initiative will build awareness of the unprecedented benefits that DNA sequencing can have on improving the human condition,” stated Illumina President and CEO Francis deSouza. “It is an innovative program that will contribute to driving down the cost of sequencing, while further unlocking the power of the human genome.” The NIH has designated three All of Us Research Program Genome Centers: A partnership of Baylor College of Medicine, Johns Hopkins University, and The University of Texas Health Science Center at Houston (UTHealth). A partnership of The Broad Institute of MIT and Harvard, Color Genomics, and the Laboratory for Molecular Medicine at Partners HealthCare. Northwest Genomics Center at the University of Washington, Seattle The genome centers are expected to produce genome data for researchers, as well as analyze data for genetic results to be responsibly returned to participants who are interested in receiving them. The NIH has committed All of Us to becoming the nation’s largest and most diverse research cohort, with plans to “oversample” communities underrepresented in research in the past. “A core value of the All of Us Research Program is to reflect the rich diversity of the United States. Including people who have been underrepresented in biomedical research will help researchers understand existing health disparities and ensure that everyone can benefit from future breakthroughs,” added Eric Dishman, director of the All of Us Research Program. https://www.clinicalomics.com/articles/illumina-furnishes-genotyping-array-novaseq-6000-to-nih-s-all-of-us/2039 Edited December 25, 2018 by niman Link to comment Share on other sites More sharing options...
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