Abstract
Informatics services company Prometheus Research will create a sleep research registry for the large-scale study Stanford Technology Analytics and Genomics in Sleep (STAGES) to collect clinical data, objective sleep data, and biological samples from 30,000 patients at more than 10 different sleep clinic sites.
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“The STAGES study is scheduled to begin recruitment in April 2018 and [we] expect data collection will last 3.5 years,” said Eileen B. Leary, senior manager of clinical research at Stanford. “The project will begin sharing data through the NIMH Data Archive (NDA) and dbGaP (the database of Genotypes and Phenotypes) once we hit the 10,000-subject milestone. Data will be uploaded every six months until the dataset is complete.”
Data will be collected in part through the Alliance Sleep Questionnaire, an online sleep/medical history questionnaire developed through efforts led by Emmanuel Mignot, M.D., Ph.D., professor of psychiatry and behavioral sciences at Stanford Medicine, who is leading the STAGES study.
Other data sources, include in-lab nocturnal polysomnography data from a one-night polysomnogram; University of Pennsylvania’s Computerized Neurocognitive Battery (CNB); actigraphy to be conducted over two to four weeks; genome-wide association studies; stored biological samples for future biomarker research, including DNA, plasma, and serum; and 3D facial images.
CNB, designed for large-scale studies, is used for measuring accuracy and speed for executive-control functions (abstraction, attention, working memory), episodic memory (verbal, facial, spatial), complex cognitive processing (language reasoning, nonverbal reasoning, spatial processing), social cognition (emotion identification, emotion intensity differentiation, age differentiation), and sensorimotor and motor speed.
Prometheus’ registry, RexStudy for Research Centers, is a configurable, integrated data management platform designed for centralizing research data and research operations across multiple research workflows. It is also designed to integrate with EHRs, and single-study tools such as REDCap, a secure web application for building and managing online surveys and databases.
“Our research informatics expertise and research data management experience with complex, multi-modal data acquisition make Prometheus a great fit for the Stanford STAGES study,” added Leon Rozenblit, Prometheus Research founder and CEO.