Greg Slabodkin of HealthDataManagement reports that the NIH has created a new hub for precision research—see link here: https://www.researchallofus.org/
The initiative includes data and tools under the Precision Medicine Initiative’s All of Us research program. It provides a way for the medical community to turn information collected through the program into new medical insights that can impact care delivery.
NIH is building one of the world’s largest biomedical datasets to generate medical breakthroughs. Using the data, researchers are looking to measure risk for a range of diseases based on environmental exposures, genetic factors and interactions between the two.
“Later this year, the All of Us research program will begin beta testing a data browser for viewing aggregated information about the All of Us participant community and analysis tools for approved researchers to query finer-grain data,” according to NIH. “This means that many millions of data points are being curated and cleaned so that researchers of all backgrounds can answer any number of research questions. Today is just the first step to providing the access and tools to enable this kind of research.”
The initial version of the All of Us research program dataset and initial set of researcher tools is expected next year. Last month, NIH Director Francis Collins told lawmakers that the program will open a secure portal in 2019 to “give researchers access to data in a de-identified format” enabling them to explore how lifestyle, environment and genes contribute to individual health.
“In 2019, the program plans to make those tools and an initial curated data set more broadly available to the research community, with more data to come over time as All of Us continues to expand collection, curation and processes for safely sharing information ranging from EHR data to surveys and digital health to genomic sequencing,” according to NIH.
In May, the All of Us research program officially began national enrollment. Currently, nearly 100,000 volunteers have signed up to provide their health information.
Ultimately, the goal is to recruit a million or more participants to contribute their physical, genomic and electronic health record data. In addition to providing blood and urine samples as well as access to their EHRs, participants will allow their information to be collected for the program through wearable devices, physical measurements and surveys.