St. Louis-based Washington University School of Medicine is partnering with the National Institutes of Health's All of Us research program to build a large, diverse biomedical data resource.
The University of Washington will help to enroll participants who represent the diversity of the St. Louis region, according to a May 12 news release.
Eight details:
- The goal is to recruit 1 million people across the country. The study currently has more than 271,000 participants who have completed the initial enrollment steps. Eighty percent of the participants come from underrepresented communities.
- The large dataset will help researchers understand how biology, environment and behavior influence health and disease.
- Washington University will use its community research registry, Volunteer for Health, to connect eligible former health study participants to this research program.
- The participants will be asked to contribute health information over a decade in the form of surveys, electronic health records, biological samples and wearable technologies.
- The research program will be evaluating gene variations linked to cancer or heart disease. If researchers identify treatments or prevention strategies for participants, genetic data will be returned to participants, which they can choose to share with their physician.
- Participants will receive information from the research program over time about their genes and about studies that used their data collected from the program.
- Safeguards are kept in place so that participants' data maintain privacy. Only data that cannot be linked back to individuals will be shared. Access to data will only be available to approved researchers conducting an investigation on medical conditions.
- The NIH has already poured millions of dollars into the tech infrastructure of the study when it awarded digital health company, Vibrent Health, a $39 million contract.