The National Sleep Research Resource: A Model for Big Data Sharing
In clinical studies, the more participants and data you have, the more reliable the results. In epidemiological studies, researchers often need to search far and wide, collecting studies from various scientists and labs in order to accumulate as much data as possible. Difficult and time-consuming, this process often slows down research.
Fortunately, if you are a researcher looking for sleep data, you need only one source: the National Sleep Research Resource (NSRR). Created, maintained and organized by researchers at the Brigham, the NSRR is the world’s largest collection of research sleep records.
Creating the NSRR
Soon after joining the Sleep Reading Center at BWH, Susan Redline, MD, MPH, of the Division of Sleep and Circadian Disorders and principal investigator of the NSRR, quickly realized that information about sleep wasn’t utilized to its full potential because it is so difficult to find, access and gather. With the help of a National Institutes of Health (NIH) grant, she, and co-principal investigator GQ Zhang, PhD, of the University of Kentucky, and her other colleagues decided to aggregate the mountains of collected sleep data to create a one-stop-shop for sleep researchers.
“These data are of great value to the community,” said Redline. “By making the data accessible to the whole investigative community, we knew we could catalyze a tremendous amount of research and foster collaborative efforts and training initiatives as well.”
Today, the NSRR is an online portal that brings together biomedical information from 10 major cohorts and clinical trials, amassing to over 30,000 sleep studies involving more than 26,000 people. The information includes raw physiological sleep signals, annotated and scored sleep events, as well as additional physiological and clinical data when available. Access to the NSRR is free and is open for the entire investigative community to use. Researchers in industry and academia, clinicians and students from around the world, following standard principles of data use and security, can use this massive repository to study a variety of topics.
Using the NSRR
Shaun Purcell, PhD, of the Department of Psychiatry, relied on the NSRR for his most recently published paper, which appeared in Nature Communications this June. His research examined sleep spindles – visible electroencephalogram (EEG) brain activity patterns that occur during non-REM sleep. Previous studies that looked at sleep spindles have been limited by small sample sizes, but through the NSRR, Purcell was able to evaluate the spindles of 11,630 individuals ranging from age 4 to 97. Thanks to the big data set, he could identify factors that contribute to variations in spindle activity, such as age, sex, medications and sleep apnea. He plans to continue to examine sleep spindle activity by using the NSRR in hopes of identifying therapeutic and diagnostic implications for certain neuropsychiatric diseases, such as schizophrenia.
“These data – collected across many years on thousands of individuals – have the potential to address many important scientific questions, and so it is great that they are being put to use. Our current research on the genetics of sleep spindles depends entirely on the NSRR. It simply would not be possible without it,” said Purcell.
The data collected in these various sleep studies can also assist investigators outside of the sleep research field in their data analysis. The NSRR has big data sets on death rates, biochemistry, diabetes, movement and breathing patterns that have been used by biomedical engineers, statisticians, cardiologists and neurologists.
As a community-driven, living resource, the NSRR continues to grow as new studies are added to the online repository and new researchers access the information available to them. Redline and her team hope to continue expanding the repository to serve as a hub for scientific engagement and collaboration, and encourage individuals from all areas of science to propose projects that use the NSRR.
If you would like to learn more about the National Sleep Research Resource, visit their website at https://sleepdata.org/