SAoUN-Information-for-HudsonAlpha-Center-for-Genomic-Medicine-Newsletter-10.23.2017

Southern All of Us Network (SAoUN) UAB joins national effort to advance research into precision medicine The University of Alabama at Birmingham is joining a growing network charged with implementing the National Institutes of Health’s All of Us Research Program, an ambitious effort to advance research into precision medicine The All of Us Research Program is a bold effort to gather data over time from more than one million people living in the United States, with the ultimate goal of accelerating research and improving health By taking into account individual differences in lifestyle, environment, and biology, researchers will use data from the program for studies on a variety of health conditions to learn more about the impact of individual differences in lifestyle, environment and biological makeup Unlike research studies that are focused on a specific disease or population, All of Us will serve as a national research resource to inform thousands of studies, covering a wide variety of health conditions Participants may be able to learn more about their own health and contribute to an effort that may advance the health of generations to come “We want this program to reflect the rich diversity of our country,” said Eric Dishman, director of the All of Us Research Program at NIH “Expanding our national network of health care provider organizations enhances our ability to reach communities traditionally underrepresented in medical research Working with participants across the country, we hope to contribute to medical breakthroughs that may lead to more tailored disease prevention and treatment solutions in the future.” UAB, in partnership with HudsonAlpha Institute for Biotechnology and Children’s of Alabama, has already launched the Alabama Genomic Health Initiative, which is a statewide effort funded by the Alabama legislature AGHI is actively recruiting Alabamians, with a goal of enrolling 10,000 persons over five years Although both AGHI and All of Us share a broad goal of learning about how biological data such as genomic information correlates with health status and risk of disease, they differ significantly in terms of the kinds of information and samples that will be obtained, and also in the scope of the analyses that will be performed Individuals in Alabama will be able to enroll separately in either AGHI or All of Us, or both if they wish “We are excited to be part of the All of Us Research Program,” said Bruce Korf, M.D., Ph.D., chair of the UAB Department of Genetics and co-director of the AGHI “Our involvement in All of Us will build on our experience in recruitment and engagement of the population gained from AGHI It provides a chance for individuals in our region to participate in an exciting national initiative that is intended to provide new insights into the prevention, diagnosis and management of diseases across the nation.” The Southern All of Us Network (SAoUN), lead by UAB is the largest network in the country, covering 12 sites in Alabama, Mississippi and Louisiana Southern All of Us Network: University of Alabama at Birmingham (UAB); Cooper Green Mercy Hospital, Birmingham, Alabama; Huntsville Hospital, Alabama; Louisiana State University Health Sciences Center, New Orleans; Tulane Medical Center, New Orleans; Tuskegee University, Alabama; UAB Hospital, Birmingham, Alabama; UAB School of Medicine’s Montgomery Internal Medicine and Selma Family Medicine programs, Birmingham, Alabama; University of Mississippi Medical Center, Jackson; University of South Alabama Health System, Mobile; and University Medical Center, Tuscaloosa, Alabama The program will start by collecting a limited set of standardized data from sources that will include: • • • • • • Participant surveys Electronic health records Physical measurements Biosamples (blood and urine samples) Mobile/wearable technologies Geospatial/environmental data Data types will grow and evolve with science, technology, and trust About the All of Us Research Program Far too many diseases do not have a proven means of prevention, or effective treatment We must gain better insights into the biological, environmental, and behavioral influences on these diseases to make a difference for the millions of people who suffer from them Precision medicine is a revolutionary approach for disease prevention and treatment that takes into account individual differences in lifestyle, environment, and biology While some advances in precision medicine have been made, the practice is not currently in use for most diseases The All of Us Research Program is a key element of the Precision Medicine Initiative (PMI) Through advances in research, technology, and policies that empower patients, the PMI will enable a new era of medicine in which researchers, health care providers, and patients work together to develop individualized care PMI launched in fiscal year 2016 when $130 million was allocated to NIH to build a national, large-scale research participant group, called a cohort, and $70 million was allocated to the National Cancer Institute to lead efforts in cancer genomics as part of PMI for Oncology The All of Us Research Program seeks to extend precision medicine to all diseases by building a national research cohort of one million or more U.S participants Many factors have converged to make now the right time to begin a program of this scale and scope Americans are engaging in improving their health and participating in health research more than ever before, electronic health records have been widely adopted, genomic analysis costs have dropped significantly, data science has become increasingly sophisticated, and health technologies have become mobile A Transformational Approach to Participation Participants in the All of Us Research Program will be true partners—not patients, not subjects—in the research process Involved in every step of program development: • • • • What data we collect What lab analyses we do What research is conducted How data gets returned PARTICIPANT SELECTION CRITERIA Inclusion Criteria: • Adults 18 and older with decisional capacity to consent • Currently reside in the United States or a territory of the United States Exclusion Criteria: • Prisoners at the time of enrollment DURATION OF PARTICIPATION AND DURATION OF STUDY Duration of Study: The All of Us Research Program is expected to last at least ten years with active enrollment occurring in the first five years Duration of Participation: Participation is expected to last for the entire duration of the Program with regular data contribution and follow up PRIMARY ENDPOINT Collection and curation of rich Participant health and biospecimen data accessible to the research community to enable a broad spectrum of research studies SECONDARY ENDPOINTS Build the infrastructure to enroll Participants, collect biospecimens, and securely share health-related data for ongoing research All of Us is a participant-engaged, data-driven enterprise supporting research at the intersection of human biology, behavior, genetics, environment, data science, computation and much more to produce new knowledge with the goal of developing more effective ways to treat disease https://allofus.nih.gov/ [see images in next page] For more information contact: Maria Claudia Norena | Program Director Southern All of Us Network (SAoUN) – Precision Medicine Initiative Department of Genetics | Office of the Chairman UAB | The University of Alabama at Birmingham 1720 2nd Ave S., Kaul 230, Birmingham, AL 35294-0024 | USA P: 205.934.5274 | mnorena@uab.edu www.uab.edu/medicine/genetics and www.allofus.nih.gov Bruce Korf, MD, PhD Principal Investigator, Southern All of Us Network Professor and Chair, Department of Genetics Director, Heflin Center for Genomic Sciences University of Alabama at Birmingham Cora E Lewis, MD, MSPH Co-Principal Investigator, Southern All of Us Network Professor and Associate Director for Research Division of Preventive Medicine, Department of Medicine University of Alabama at Birmingham