A gathering of breast cancer survivors who were convened in Birmingham, Alabama by All of Us Southern Network partners.
Lack of adequate research in women’s health impedes the care women receive for common conditions like heart disease, breast and ovarian cancers, pain, endometriosis, rheumatoid arthritis, pregnancy and childbirth, chronic fatigue and more. Through their participation in the All of Us Research Program, women are stepping up to expand what researchers can learn about health issues that impact women.
“The need for comprehensive research on women’s health remains paramount,” said Janine Clayton, M.D., Director of National Institute of Health’s Office (NIH) of Research on Women’s Health. “Across various conditions, there are gaps in our understanding and treatment approaches, compelling us to delve deeper. We’ve seen progress, yet vast opportunities await.”
For example, the signs and symptoms of a heart attack are often missed by women and their providers because the “classic” symptom of severe chest pain occurs less frequently in women. This leads to delayed care. Symptoms that are more common in women – like back pain, nausea or dizziness – are only more recently understood and continue to lag in public awareness.
More data about the health experiences of women will help inform a better understanding of unique health needs of women. The All of Us Research Program offers just that, through a historic effort to collect and study data from one million or more people living in the United States and its territories. The program’s mission is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all. At the heart of the program lies the drive to gather a lot of health data to support research on a wide range of health research questions.
Nearly 250,000 women are already sharing their health data with All of Us registered researchers. More than 145,000 of these participants have whole genome sequences (WGS) available for use in studies. Having data from the entire genome is important because it can help researchers find more genetic variants that influence health. Program participants can also share other kinds of data to drive new scientific insights.
“The variety and diversity of the All of Us data are remarkable – the combination of genomic information, surveys, electronic health records, physical measures, and more makes the scale of what is available to researchers significant,” said Clayton. “For example, the NIH Women’s Health Initiative had over 161,000 women enrolled – a tremendously impactful project in its own right. The diversity of women and their data within the All of Us dataset today provides another enormous potential for discovery.”
All of Us has elicited strong interest from the research community, including scientists who study women’s health. So far, more than 730+ institutions have data access and use agreements with the program, presenting opportunities for researchers to establish collaborative teams across organizations. There are more than 400 active projects in the Researcher Workbench focused on women’s health issues, such as menopause and maternal mortality. And researchers have already published dozens of papers on women’s health topics using All of Us data.
All of Us data is an essential resource for advancing research and innovation on conditions affecting women, which is the focus of a newly-issued White House Executive Order and research initiative directing a broad range of efforts to prioritize women’s health research. Because All of Us collects data over multiple years and across all diseases and conditions, the program’s Researcher Workbench is poised to support efforts to examine women’s health issues across the research community, including NIH’s Institutes and Centers and other federal agencies. The cloud-based design of the platform encourages collaboration across agencies, allowing researchers to leverage artificial intelligence and related tools, and expand the understanding of women’s midlife health and other health issues.
Women who participate in All of Us are helping researchers make new discoveries by contributing their data. The program is also returning genetic health-related research results to participants who choose to receive them to help them better understand their own health, including whether they may be at increased risk for certain conditions, like breast and ovarian cancers. Since the program began returning health-related DNA research results in December 2022, more than 222,000 participants who have contributed blood samples have been invited to receive health-related research results, at no cost to them.
Participants who opt to receive their genetic health results can use the information in follow-up conversations with their health care providers to consider important treatment or screening decisions.
“Delivering health-related genetic results, including positive findings for conditions like hereditary breast and ovarian cancer syndrome caused by BRCA1 and BRCA2 mutations, demonstrates the important and tangible health insights participants can learn about themselves,” said Josh Denny, M.D., M.S., Chief Executive Officer of All of Us. “In the longer term, the diversity of participants in the program will help ensure new scientific knowledge gained by studying this data will benefit all communities.”
All of Us still has more work to do to reach its goal of one million or more participants.
“NIH is still inviting women to participate in this transformative effort,” said Clayton. “There is opportunity for impactful research in women’s health – and All of Us is actively seeking participants and researchers to continue to make progress in better understanding the unique needs of women.”
Those who want to learn more about participation and how they can help advance research can visit JoinAllofUs.org.
Researchers can register to begin using the All of Us dataset at ResearchAllofUs.org.
