Guest post by Valerie Schneider, PhD, Acting Chief of the Information Engineering Branch, National Center for Biomedical Information, NCBI.
On Monday, November 11, the federal government will recognize veterans of the U.S. Armed Forces for their patriotism, love of country, and willingness to serve and sacrifice for the common good. Veterans Day also provides a special opportunity to consider the important relationships between our veterans and the missions of NIH and NLM. Veterans have not only volunteered to contribute to national safety through military service, but many also choose to volunteer to contribute deidentified data related to their health, lifestyles, and genetic information in support of groundbreaking and lifesaving biomedical research. As a distinctively specialized and diverse population, these veterans and their contributions have a unique potential to improve health worldwide. By coordinating with other federal agencies, NLM has played an important role in making their contributions of health and genetic data available to the research community.
Veterans Help Expand a Key Genetic Database
This is exemplified through the recent release of summary data from the Million Veteran Program (MVP) phenome-wide association study (PheWAS), available now in NLM's database of Genotypes and Phenotypes (dbGaP). The MVP is a research program from the U.S. Department of Veterans Affairs (VA) that has collected and analyzed deidentified health information from over one million veteran volunteers. These data include genes, lifestyle factors, military experiences, and exposures that may impact health and wellness. In fact, the impact of this release has already made its way to practical application, including for a recently published study -- one of the largest of its kind -- that used these MVP data to look at genetic associations with health-related traits and disease among a diverse population. Because this dataset is so diverse, the availability of veteran-sourced data at NLM will open the door for researchers to rapidly accelerate their research on health concerns for people of all backgrounds, including minority populations.
For almost twenty years, dbGaP has archived and distributed the data and results from studies that investigated the interaction of genotypes (genetic makeup) and phenotypes (observable traits) in humans at no cost to users. You can learn more about dbGaP -- including information about data access, search functionality, and use of controlled vocabularies and other mechanisms to increase the discoverability of data -- in this recent video from NLM.
YouTube: dbGaP | The database of Genotypes and Phenotypes
PheWAS summary data from this MVP study comprise information from approximately 600,000 veterans from four broad ancestry groups, with hundreds of phenotypic traits recorded in medical records. This dataset is one of the largest publicly available PheWAS datasets to date and does not require an application to access the data. Users can explore the data by identifying the most statistically significant results in the new Genomic Analysis Navigator and visualizing them in the context of other genomic data in the Genome Data Viewer (GDV). For a more granular look, researchers can apply for access to additional MVP data that includes more sensitive phenotypes and population subsets. The dbGaP Advanced Search interface can be used to identify other studies in this database with veteran participation.
Veterans Participate in Clinical Research
Veterans interested in becoming research volunteers may want to try ClinicalTrials.gov, an easy-to-use NLM resource for veterans and clinicians to find information about relevant clinical trials that involve veteran populations. The website offers "Fast Forward from ClinicalTrials.gov," a series of short videos about the recently modernized ClinicalTrials.gov website that can help all users, including veterans, search for studies of interest and learn whether a study is recruiting. Veterans are encouraged to participate in clinical research such as the MVP, the largest health care research effort at the VA. Not only does this improve diversity in research, but it can also advance health care tailored to veterans' particular needs.
Providing public access to information about the clinical studies that it funds and conducts through ClinicalTrials.gov helps the VA's Veterans Health Administration (VHA) advance health knowledge and care for veterans and the nation at large. The VHA's Office of Research and Development (ORD) is committed to both informing veterans and the public about its research and maximizing the impact of the studies it supports. To achieve these goals, Principal Investigators of ORD-funded clinical trials are responsible for registering their trials with and submitting summary results to ClinicalTrials.gov as a condition of funding.
There are nearly 4,000 closed and ongoing studies by U.S. Veterans Affairs currently registered on ClinicalTrials.gov. This includes the Million Veteran Program Return of Actionable Results (MVP-ROAR), a clinical trial that evaluated whether immediate or delayed sharing of actionable genetic testing results with veterans is more effective in improving their medical management, outcomes, and quality of life. These studies also include Genomics of Posttraumatic Stress Disorder (PTSD) in Veterans, an observational study that compared the genetic profiles of combat-exposed U.S. veterans diagnosed with PTSD to those without the condition to help inform prevention and treatment of PTSD. Both studies involved veterans participating in MVP.
Thanking Our Veterans
NLM, through its coordination with other federal agencies, is proud to play an important role in amplifying veterans' contributions to biomedical research by making them available to the research community. This Veterans Day, we thank them for the contributions they have made both to the safety of our nation and in support of our mission to enable biomedical research and support public health.