NATIONAL CENTER ON SLEEP DISORDERS RESEARCH NATIONAL HEART, LUNG, AND BLOOD INSTITUTE: Sleep Disorders Advisory Board Meeting Minutes, December 10, 2010

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NATIONAL CENTER ON SLEEP DISORDERS RESEARCH NATIONAL HEART, LUNG, AND BLOOD INSTITUTE Sleep Disorders Advisory Board Meeting Minutes December 10, 2010 TABLE OF CONTENTS Attendees Remarks Introduction Adoption Of Minutes From The April 14, 2009 SDRAB Meeting NCSDR Director's Report: Michael Twery, PhD Trans-NIH and Federal Agency Updates 2011 Sleep Research Plan Overview Sleep Research Plan Development and Discussion Sleep Research Plan: Public Comments Action Items Future Meeting Certification NCSDR Home Page Sleep Disorders Research Advisory Board Page BOARD MEMBERS PRESENT Dr. Charles Czeisler, Chair Ms. Ann Austin Dr. Mercedes Carnethon Dr. Ronald Chervin Ms. Karen Cushing Dr. Leszek Kubin Dr. Sairam Parthasarathy Dr. Daniel Rudic Dr. Catherine Vena Dr. Michael Vitiello Mr. Gagandeep Walia Mr. Robert Waterman BOARD MEMBERS ABSENT None EX OFFICIO MEMBERS PRESENT Dr. Thomas Balkin, WRAIR, DOD Dr. Mack Mackiewicz, NIA, NIH Dr. Merrill Mitler, NINDS, NIH Dr. Rosalind King, NICHD, NIH Dr. Susan Shurin, NHLBI, NIH Dr. Michael Twery, NHLBI, Executive Secretary Dr. Aleksandra Vicentic, NIMH, NIH FEDERAL LIAISON REPRESENTATIVES PRESENT Dr. Lawrence Baizer, NIAAA, NIHI Dr. Janet Croft, NCCDPHP, CDC Dr. Harold Gordon, NIDA, NIH Dr. Lynne Haverkos, NICHD, NIH Dr. Indira Jevaji, ORWH, NIH Ms. Andrea Piani, Census Bureau, Department of Commerce Dr. Roger Rosa, NIOSH, CDC Dr. Corinne Silva, NIDDK, NIH Dr. Barbara Sorkin, NCCAM, NIH Dr. Xenia Tigno, NINR, NIH FEDERAL EMPLOYEES PRESENT Mr. Peyvand Ghofrani, NHLBI, NIH Dr. James Kiley, NHLBI, NIH Dr. Aaron Laposky, NHLBI, NIH Dr. Daniel Lewin, NHLBI, NIH Dr. Sandy Liu, FAA Dr. Natalia Sizov, FAA MEMBERS OF THE PUBLIC PRESENT Ms. Georgianna Bell, RLS Foundation Mr. James Fadden Ms. Julie Flygare, Wake Up Narcolepsy Dr. Ed Grand, ASAA Ms. Patricia Higgins, Narcolepsy Network Dr. Andrew Monjan Ms. Meaghan Pilarcik, HMCW Dr. Richard Rosenberg, AASM Mr. Ronald Sears, NSF Dr. Patrick Strollo, AASM Dr. Jim Walsh, SRS Dr. Hargsoon Yoon, NSU Return to Table of Contents REMARKS: DIRECTOR, National Heart Lung and Blood Institute: Susan Shurin, MD The challenge of sleep disorders research is coordination across multiple NIH Institutes and Centers and academic areas in particular with declining budget and unprecedented scientific opportunities and research priorities that are to be set by the research community. The field has a rich history that has contributed to our understanding of sleep and its connection to current public health issues and the importance of sleep’s connection to obesity, metabolic disease, cardiovascular disease, etc. Now, better understanding on a molecular level combined with public health data provide increased scientific opportunities. The discussion going forward should be framed to appeal to all stakeholders including the healthcare industry, and to educate the public and policy makers. Return to Table of Contents INTRODUCTION, Michael Twery, PhD The meeting was called into session at 8:30am as previously announced in the Federal Register [FR Doc. 2010-27318]. The Board and audience were notified that the meeting audio would be recorded. The Sleep Disorders Research Advisory Board (SDRAB) is a Federal Advisory Committee established by the NIH Revitalization Act of 1993 (42 USC Sec. 285b-7). Members of the Board were informed of their status as special government employees during the meeting and that conflict of interest guidelines apply to conduct. If at any time there is a potential COI, each person should excuse themselves and go outside until the conflict has concluded. Those participating via telephone were introduced by Dr. Twery. SDRAB and Trans-NIH liaison members introduced themselves. Return to Table of Contents ADOPTION OF MINUTES FROM THE August 27, 2010 SDRAB MEETING, Chair A motion to adopt the minutes of the preceding in-person meeting on August 27, 2010 without amendment carried unanimously. Return to Table of Contents NCSDR DIRECTOR'S REPORT, Michael Twery, PhD The diverse disease and condition topic areas for clinical sleep and circadian research funded across the NIH were presented. Overview of clusters of research at the NIH, and scientific areas where sleep and circadian research exists, and is currently missing and could be added were described. Sleep can and does straddle multiple scientific areas, which demonstrates that while there are pure sleep and pure circadian research grants, there is also much integrated research on metabolism, cardiopulmonary, etc. Healthy People 2020 program and new inclusion of sleep to its areas of focus was discussed. Data sets are available and show sleep-related public health problems across America and indicate there is much opportunity for improvement in the sleep and overall health of the nation. Overview of possibilities for continuing efforts now that HP2020 has added sleep was presented. Return to Table of Contents TRANS-NIH AND FEDERAL AGENCY UPDATES Federal government agencies outside the NIH are congressionally mandated stakeholders in the NCSDR. Dr. Natalia Sizov of FAA’s Office of Environment and Energy provided a comprehensive talk on “Noise Effects on Sleep”. Probability of waking from one loud event increases with db level, almost on a one-to-one basis. Most of noise research surveys have been conducted exclusively overseas since the late 90s/early 2000s, with virtually no domestic research. Research needs are: Large scale surveys and field studies that include children, chronically ill persons, and other at risk people. Relationships between noise and cardiovascular disease and other health diseases and conditions. Upcoming conference on “Effects of Noise on Health” is a trans-agency conference on April 19-20 in Washington, DC. FAA is interested in working with other agencies and researchers; currently FAA mostly works with engineers and policy makers. FAA is interested in feasible research with high probability of success. SDRAB members showed great interest in Dr. Sizov’s presentation and in hearing presentations from other agencies during future SDRAB meetings. SDRAB Chair suggested Dr. Sizov joins SDRAB or routinely participate in SDRAB meetings. NIH and Federal Agency Representatives described current and upcoming programs as well as areas of interest within their organization in relation to sleep research. The following institutes and agencies reported: NIA, NIAAA, ORWH, NICHD, NINDS, NIDA, NIDDK, NIMH, NINR, CDC, DOD. Return to Table of Contents 2011 SLEEP RESEARCH PLAN PROCESS OVERVIEW, Chair w/ Michael Twery, PhD SDRAB chair described the process and activities that have been completed so far towards creation of the sleep research plan. Included has been formation of primary strategic group by SRS and AASM leadership, formulation of individual per-goal working groups to create content, public call to review the produced content and suggest changes, and reconvening the primary strategic group lead by President, SRS to incorporate public comments and the work of each sub-group into one cohesive document. Chair in cooperation with NCSDR Director described the tasks that remain and the timeline for completing the sleep research plan. Return to Table of Contents SLEEP RESEARCH PLAN DEVELOPMENT AND DISCUSSION, Chair/Board Members Dr. Czeisler worked with those present, including working group and SDRAB members, trans-NIH members, and the public to incorporate previously-identified and currently agreed-upon changes into the draft strategic plan document. Highlights of the discussion follow. Motions to delete a sentence that had described training as having highest priority carried. 2 board members opposed the motion. Motion to add text describing contribution to human health in introduction and conclusion sections, and for each objective throughout the plan was unanimously defeated. Motion to add text describing contribution to human health in introduction and conclusion only, unanimously carried. Motion to remove any text that states there is prioritization of scientific areas in each objective (except for goal 5 which is prioritized with respect to scientific area) carried. This motion was subsequently rescinded. A modified motion was made for goals 2, 3, and 4 to have their original priorities; for goal 1 to not be prioritized; and goal 5 to continue to have priorities with respect to scientific area as required. The motion carried. 4 board members opposed the motion. Return to Table of Contents SLEEP RESEARCH PLAN: PUBLIC COMMENTS Dr. Andrew Monjan and Dr. Jim Walsh both stated there must ultimately be a few top research priorities identified, in particular high risk and high reward research. Mr. Jim Fadden spoke on behalf of the Night Owl and Non-24 patient groups. He explained these persons and those with other circadian disorders, including delayed phase, typically do not get the specialized and useful help that they need. He expressed that training to spread knowledge of this area to physicians may be helpful in diagnosis and assistance. Mr. Fadden suggested a statement in the research plan that those in the workforce suffering from circadian disorders should be supported with flexible work schedules and telework opportunities. He was supportive of existing text regarding later school start times for teens. Lastly he provided additional comments for the sleep research plan regarding differences in temporary vs. permanent/long-term circadian problems and the need for research particularly for the long-term varieties. Ms. Georgiana Bell, executive director of the RLS Foundation, explained their organization will soon name national centers of excellence and will be working to ensure consistent diagnosis and treatment standards of RLS via outreach and educational efforts. Dr. Patrick Strollo, AASM president, thanked SDRAB for its work and proposed two priority areas: Impact public health by translating research into practice via alliances (e.g. American Sleep Medicine Foundation) T32s that can be improved to become more effective, perhaps with some pilot funding. Return to Table of Contents ACTION ITEMS Chair will review suggested changes to the research plan carefully and slowly and accept them. The document will then be submitted to Dr. Walsh and members of working groups for additional review and preparation of an introduction section. Names of persons interested in serving on SDRAB to be submitted to NCSDR director (some members will be retiring). SDRAB Chair suggested replacement members observe the upcoming April meeting, and begin serving in June when existing members will retire from the Board. Chair invited Mr. Fadden to advertize on relevant internet mailing lists that SDRAB is looking for patient members, and for nominees from the patient community to be submitted to NCSDR director. The next in-person meeting will include the selection of the next SDRAB chair during a short closed session. Return to Table of Contents FUTURE MEETINGS January 4, 2011, conference call [FR Doc. 2010-29523] These Minutes will be presented to the full Board at its next regularly scheduled in person meeting for consideration, amendment as approved, and formal adoption. Return to Table of Contents CERTIFICATION I hereby certify that the foregoing minutes are accurate and complete. Charles Czeisler, PhD, MD Chair Michael Twery, PhD Executive Secretary Return to Table of Contents Last Updated August 2011