National Sleep Research Resource (NSRR)
Academic User’s Group Meeting and Conference Call Minutes
January 31, 2014 3:00 p.m. EST
Introduction/Welcome to the AUG Susan R. opened the meeting and provided a brief introduction of NSRR staff members from Brigham and Women’s Hospital, Beth Israel Deaconess Medical Center, and Case Western Reserve University. A brief introduction of the AUG members was then provided.
NSRR Overview Susan R. provided an overview of the NSRR grant main goal, and discussed collaboration with BioLincc and possible future collaboration with dbGaP. Funding for NSRR is via a 5 year NIH/NHLBI grant with support from Brigham and Women’s Hospital (BWH) in years 6 through 10. The NSRR Aims were described (summarized below), and an NSRR Organizational chart was presented with an explanation of the working groups/teams.
Purpose of the AUG Susan R.—Academic User Governing Committee is comprised of key stakeholders who are representatives of major participating study groups, community users, and technical experts. The AUG will meet bi-monthly via conference call and 1 to 2 times annually in person. The AUG will develop governance policies, provide input into usability, accelerate the dissemination of tools, help prioritize tasks, provide feedback on web-based user guides and webinars, and create a dynamic user community.
Unveiling of sleepdata.org Remo M. created a survey requesting feedback from AUG members after the meeting and explained the 3 components of sleepdata.org: Explore datasets, download data, analyze data.
Regulatory Issues Susan R. explained that NSRR is trying to be as congruent as possible with BioLincc and to closely collaborate with that group. BioLincc has agreed to provide a link on their site to sleepdata.org when the BioLincc data repository contains data from research participants who also have PSG data residing in the NSRR. NSRR has agreed to do the same. In the future, NSRR hopes to form a similar relationship with dbGaP. Susan R. also discussed the need for a Data Use Agreement (DUA) and IRB review at sites wishing access to NSRR data. Susan R. will work with cohorts to ensure Steering Committees are comfortable with the data that is being shared.
Questions from the AUG