NATIONAL CENTER ON SLEEP DISORDERS RESEARCH NATIONAL HEART, LUNG, AND BLOOD INSTITUTE: Sleep Disorders Advisory Board Meeting Minutes, April 29, 2011

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NATIONAL CENTER ON SLEEP DISORDERS RESEARCH NATIONAL HEART, LUNG, AND BLOOD INSTITUTE Sleep Disorders Advisory Board Meeting Minutes April 29, 2011 TABLE OF CONTENTS ATTENDEES INTRODUCTION ADOPTION OF MINUTES FROM THE August 27, 2010 SDRAB MEETING, Chair DEPARTING SDRAB MEMBERS NCSDR DIRECTOR'S REPORT, Michael Twery, PhD TRANS-NIH AND FEDERAL AGENCY UPDATES NCSDR WEBSITE REVISION COMMITTEE REPORT 2011 SLEEP RESEARCH PLAN PROCESS UPDATE, Michael Twery, PhD CLOSED SESSION SLEEP RESEARCH PLAN: PUBLIC COMMENTS ACTION ITEMS FUTURE MEETINGS 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. Rosalind King, NICHD, NIH Dr. Mack Mackiewicz, NIA, NIH Dr. Merrill Mitler, NINDS, 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. Aaron Laposky, NHLBI, NIH Dr. Daniel Lewin, NHLBI, NIH MEMBERS OF THE PUBLIC PRESENT Mr. Matt Baldwin, Narcolepsy Network Mr. James Fadden Ms. Julie Flygare, Wake Up Narcolepsy Mr. Peter Mansbach Ms. Genna McMahon Ms. Meaghan Pilarcik, HMCW Dr. Richard Rosenberg, AASM Dr. Patrick Strollo, AASM Dr. Jim Walsh, SRS 43 persons observed the meeting via remote teleconference. 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. 2011-8157]. 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 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 December 10, 2010 as amended carried unanimously. A motion to adopt the minutes of the preceding teleconference and webinar meeting on January 4, 2011 without amendment carried unanimously. Return to Table of Contents DEPARTING SDRAB MEMBERS NCSDR director presented certificates of appreciation to SDRAB members whose terms were set to expire in June of 2011. Patient representatives Ms. Austin, Ms. Cushing, and Mr. Waterman, as well as Chairperson Dr. Czeisler were thanked for their service and immense contributions to the revision of the 2011 national sleep disorders research plan. Return to Table of Contents NCSDR DIRECTOR'S REPORT, Michael Twery, PhD Facts and opinion pieces in the mainstream media concerned with sleep and societal issues (surgical mistakes, FAA employee fatigue) demonstrate the relevance and importance of societal sleep issues. Summary of sleep and circadian NIH grants in fiscal years 2008, 2009, and 2010 by Institute and the grant mechanisms utilized by funded grants in 2010, demonstrate vast opportunities for sleep and circadian researchers. Team-science support for sleep and circadian at the NIH was exemplified by active funding NIH-wide for about 90 center or program grants. Grant data indicate that studies of sleep in critical care patients, and the relationship of sleep to metabolism are emerging as new directions of research. Investigators have had good opportunities. NIH will continue to work with professional societies and stakeholders to provide forums for research education and dissemination. Trans-NIH and NCSDR activities are ongoing and strong. In addition to activity on the research plan, two PARs have been issued by NCSDR staff since the December 2010 Board meeting. They are: Education Research in Sleep Health and Sleep-Circadian Biology (R25), and Etiology and Pathophysiology of Sleep Disordered Breathing in Pregnancy (R01). The ancillary sleep disordered breathing component to NICHD’s study of pregnant women was also discussed. An array of initiatives across NIH where sleep and circadian researchers may have potential consideration, representation, and opportunities were included in the binder for this meeting and discussed. The dissemination of these opportunities with colleagues that may be interested in applying was encouraged. It was noted that sleep and circadian biology is well-represented in the recently-revised NIH obesity research plan. Examples of government agencies applying sleep health science to real practical everyday life problems that affect portions of society were discussed. This included the FAA and effects of airport noise pollution on sleep and health, and a recent FDA workshop on safety and efficacy of hypnotic drugs. Healthy People 2020 and inclusion of a new focus area on sleep health was presented. Sleep health appears on a list of 22 IOM recommended health indicators for the United States and the health of the nation during the next 10 years and beyond. Now, the evidence needs to be developed and disseminated by the research, science, education, and clinical sleep and circadian community. More data and understanding of best practices to disseminate those data and knowledge are needed; The new NCSDR R25 funding opportunity announcement is designed to provide a grant mechanism to support such activities. Signals of consensus across disciplines and groups also raise public awareness and allow policy makers to determine importance and relevance of sleep and sleep-related matters to society. Researchers were again encouraged to continue submitting applications. In discussion, the Board acknowledged the significance of sleep appearing on the IOM and Healthy People 2020 agenda. The need to continue the momentum of research, training, education, and outreach was noted. Return to Table of Contents TRANS-NIH AND FEDERAL AGENCY UPDATES Dr. Janet Croft of CDC’s National Center for Chronic Disease Prevention and Health Promotion provided a comprehensive update of CDC Sleep Health Surveillance. Goals of CDC’s sleep health program are to increase public awareness, promote sleep healthy policies, and improve national and state surveillance systems. The 3rd objective provides data that support the other objectives. CDC work in a variety of sleep-related areas including school outreach and shift work policies. The prevention research center currently has one project focused on school start time. Related to this project is a recent report in Virginia showing morning car accidents among students have declined in schools that have delayed school start time. CDC surveillance system has allowed sleep questions to be put into several survey instruments. The Behavioral Risk Factor Surveillance System (BRFSS) question “do you feel you get enough sleep?” gets people into the doctor’s office even more than specific sleep disorder questions. Sleep surveillance has been improved with a more detailed BRFSS sleep module that has been developed with NSART and subsequently implemented in 12 states. Youth Risk Behavior Surveillance System (YRBSS) is an instrument that measures high school students’ sleep amounts. Data show that as they progress from grade 9 to 12, they report less sleep. Future health surveillance needs include research validation of self-reported sleep measures (e.g. sleep duration, perceived sleep quality, sleep disorders). Universities are interested in validation activities, and budget and funding are a challenge. BRFSS in particular needs sleep validation studies. Dr. Croft encouraged researchers to download and utilize sleep related CDC datasets that are freely available. 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, NCAAM, NINDS, NIDA, NIDDK, NINR, NIMH, CDC. Representatives encouraged researchers to contact them to understand how their research questions may fit with IC program interests. NCSDR WEBSITE REVISION COMMITTEE REPORT SDRAB member Dr. Chervin reported on website committee discussions. He thanked Ann Austin, Peyvand Ghofrani, and Michael Twery for serving on the committee. SDRAB and trans-NIH members should become engaged in reviewing and mapping sleep and circadian grants across strategic plan categories and disease and disorder areas. This may also be a way for SDRAB to appreciate details and levels of sleep and circadian research that NIH supports, and also uncover specific research areas that may require additional attention. Motion for SDRAB to begin mapping NIH sleep and circadian grants onto strategic plan goals (and possibly objectives) unanimously carried. The final product will be a unique contribution to the NCSDR website; NCSDR will work closely with SDRAB during this process. 2011 SLEEP RESEARCH PLAN PROCESS UPDATE, Michael Twery, PhD The completed research plan was internally discussed by NIH Institutes, Centers, and Offices (ICOs), and later formally distributed to NIH ICOs for comment. Subsequent to this discussion, details of specific recommendations on initiatives have been removed; strategic plan is now less prescriptive in that regard although all goals and science remain as advised by SDRAB. The updated plan will identify specific scientific domains without prioritization. It was noted that if NIH review of the draft Plan document results in substantive changes, those items would come back to the Board for discussion. SDRAB recommended the development of appendices to provide updates and clarifications in science and terminology. The board may produce these documents and maintain a listing of changes to inform readers on an ongoing basis, and for integration into the next major version of the document. Subsequent to public comment period, motion to approve the plan pending minor edits passed unanimously. CLOSED SESSION The Board met briefly in closed session as previously announced in the Federal Register to consider the election of a new Chair. Dr. Michael Vitiello was elected and is expected to serve as Chair for the balance of his term ending June 30, 2012 SLEEP RESEARCH PLAN: PUBLIC COMMENTS Dr. Jim walsh, SRS president stated he is very pleased with the process and feels scientific community had adequate opportunity for input into the plan. Dr. Patrick Strollo, AASM president echoed SRS support for the plan and process. Ms. Julie Flygare, Wake Up Narcolepsy asked if citations should be included with regard to disease and condition prevalence. She suggested a closer look at definition of cataplexy in the glossary. Mr. Peter Mansbach and Ms. Genna McMahon suggested research on delayed/advanced phase syndromes; she explained that those suffering from these conditions are often very tired and want therapy to help them. ACTION ITEMS SDRAB endorsed dissemination of the final research plan at all relevant professional society meetings. A listing of meetings, along with SDRAB member(s) to be responsible will be compiled. NCSDR will coordinate dissemination so there is no duplication of effort. Submissions to bulletins of relevant journals, describing the process of developing the plan, along with brief summary and link to the plan would also be completed by SDRAB in coordination with NCSDR. Plainly written, summaries of the plan may be prepared for patient groups, with targeted outreach and dissemination for patient group audiences. Webinars may be utilized to further disseminate the plan and provide a platform for two-way communication with audiences. NCSDR director encouraged sleep research community to consider applications under the R25 Program Announcement to develop optimized dissemination plans in response to the Research Plan. SDRAB and NCSDR activities related to NCSDR website re-design and value-added content will move forward with NCSDR leadership and SDRAB cooperation. FUTURE MEETINGS The SDRAB meeting will continue to meet annually. The exact date has yet to be determined. Details will be posted when available on the SDRAB website http://www.nhlbi.nih.gov/meetings/sdrab/index.htm 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. CERTIFICATION I hereby certify that the foregoing minutes are accurate and complete. Charles Czeisler, PhD, MD Chair Return to Table of Contents Last Updated February 20112