NATIONAL CENTER ON SLEEP DISORDERS RESEARCH
NATIONAL HEART, LUNG, AND BLOOD INSTITUTE

Sleep Disorders Research Advisory Board Meeting Minutes
June 26, 2001

The 14th meeting of the National Sleep Disorders Research Advisory Board was convened on Tuesday, June 26, 2001, in the Neuroscience Center, 6001 Executive Boulevard, National Institutes of Health (NIH), Bethesda, Maryland.  The meeting was open to the public from 8:30 a.m. to adjournment at 3:00 p.m.  Dr. David White presided as Chair.

TABLE OF CONTENTS

Attendees
Call to Order
Approval of December 6, 2000 Board Meeting Minutes
Report of the NCSDR Director
Strategies for Reaching Underrepresented, Underserved Minorities With Public Health Messages
Activities of the NIH Office of Behavioral and Social Sciences Research
Activities of the National Space Biomedical Research Institute
Advisory Board Research Directions
Closed Session-SDRAB Members Only
NCSDR Research Plan Revision
Sleep Academic Awards Program Update
Education Subcommittee Update
Other Business
Adjournment
Certification
 

BOARD MEMBERS PRESENT

Dr. David White (Chair)
Dr. Gregory Belenky (ex officio)
Dr. Gene Block
Dr. Robert Greene (ex officio)
Dr. Robert Greene (ex officio)
Dr. Carl Hunt (ex officio)                                   
Dr. Israel Lederhendler (ex officio)
Dr. Carol Landis
Ms. Sandra McGinnis
Dr. Richard Millman
Dr. Andrew Monjan (ex officio) 
Dr. Paul Nichols (ex officio)
Dr. Michael Rosbash
Ms. Dana Spearman
Mr. Phillip Williams
Dr. Marian Willinger

BOARD MEMBERS ABSENT

Ms. Carol Bell Anderson
Dr. Mary Carskadon
Dr. James Everett, Jr.
Dr. Claude Lenfant (ex officio)
Dr. Emmanuel Mignot
Dr. Marian Willinger

LIAISON MEMBERS PRESENT

Dr. Linda Kennedy 
Dr. Thomas Raslear
Dr. Roger Rosa
Dr. Bette Siegel, NASA

LIAISON MEMBERS ABSENT

Dr. Daniel Chapman
Dr. Charles Cortinovis
Ms. Kathy Creighton
Dr. Harold Gordon
Dr. Mary Leveck
Dr. David Tomko
Dr. Ellen Witt

FEDERAL EMPLOYEES PRESENT

Ms. Kim Brinson, NHLBI
Mr. Al Golden, NHLBI/NCSDR
Mr. Timothy Hays, NIMH
Dr. Raynard Kington, OBSSR
Ms. Sue Rogus, NHLBI
Ms. Toni Rousey, NHLBI
Ms. Ellen Sommer, NHLBI
Dr. Michael Twery, NHLBI
Mr. David L. Wade, U.S. Census Bureau

MEMBERS OF THE PUBLIC PRESENT

Mr. Jerome Barrett, American Academy of Sleep Medicine
Ms. Georgianna Bell, Restless Legs Syndrome Foundation
Dr. Robert Bisner, Columbia University
Mr. Bob Cloud, Narcolepsy Network
Dr. Charles Czeisler, Harvard Medical School
Dr. Darrel Drobnich, National Sleep Foundation
Ms. Christin Engelhardt, American Sleep Apnea Association
Ms. Andrea Herman, Better Sleep Council
Mr. Al Nugent, MRI
Ms. Natalie Ochs, FDC Reports
Mr. Chris Peterson, SRI International
Dr. J. Catesby Ware, Eastern Virginia Medical School
Ms. Terry Wilson, Prospect Center

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I.    CALL TO ORDER - Dr. David White

Dr. David White, Sleep Disorders Research Advisory Board Chair, called the 14th meeting of the Sleep Disorders Research Advisory Board to order at 8:40 a.m. on June 26, 2001.  He welcomed the Board members, members of the public, NIH staff and introduced Dr. Carl E. Hunt, Director, National Center on Sleep Disorders Research (NCSDR).

Dr. Hunt reminded the Board that according to Public Law 92-463, the Federal Advisory Committee Act, the meeting of the Sleep Disorders Research Advisory Board would be open to the public.  A notice of this meeting was published in the Federal Register indicating that it would start at 8:30 a.m. and remain open until approximately 3:00 p.m., and that this meeting would be broadcast live over the Internet. Dr. Hunt also advised Board Members on the policy regarding Conflict of Interest, and proposed a change in the sequence of agenda items, without objection, moving Item 4 “Recognition of Departing Committee Members” to after the Education Subcommittee Report.

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II.   APPROVAL OF DECEMBER 6, 2000 BOARD MEETING MINUTES –Dr. David White

Approval of the minutes was seconded and approved unanimously without further discussion

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III.  REPORT OF THE DIRECTOR, NCSDR – Dr. Carl E. Hunt

This report summarized NIH sleep-related activities and other relevant developments since the prior Advisory Board meeting in December 2000, including the addition of 2 new staff members in the NCSDR

Dr. Hunt reported that the target of doubling the NIH budget by 2003 was on-target. While the overall number of competing grants has leveled off in the past 3 years, the individual cost per grant has risen.  Sleep research funding has increased 70% between fiscal years 1997 and 2000, and 3.2% between fiscal years 1999 and 2000.

Sleep-related initiatives since the December 2000 Advisory Board meeting include a Program Announcement (PA) 01-086: “Restless Legs Syndrome and Periodic Limb Movement Disorder,” and an RFA (RFA-HL-01-006): “Sleep and Sleep Disorders in Children”. Upcoming workshops of interest to the sleep community include: 

• "Bioinformatics in Neuroscience and Sleep Research", July 16-17, 2001, co-sponsored by the American Academy of Sleep Medicine, Sleep Research Society, National Center on Sleep Disorders Research, and the National Heart, Lung and Blood Institute;

• “Neurobiology Of Sleep And Waking: Implications For Insomnia” September 10-11, 2001, co-sponsored by National Center on Sleep Disorders Research, National Institute of Mental Health, National Institute on Aging, National Institute on Drug Abuse, and the National Institute on Alcohol Abuse and Alcoholism;

• “Neurocognitive Changes Following Cardiac Surgery” , September 13-14, 2001

• “Sleep, Fatigue, and Medical Training: Optimizing Learning and the Patient Care Environment”,  October 28-29, 2001.

Dr. Hunt then briefly outlined recent educational activities, including the ”Garfield – Star Sleeper” campaign, and provided data on the number of communications NCSDR has received from the general public regarding sleep issues.

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IV.   STRATEGIES FOR REACHING UNDERREPRESENTED, UNDERSERVED MINORITIES WITH PUBLIC HEALTH MESSAGES: ‘BACK-TO-SLEEP” EXPERIENCES – Dr. Marian Willinger

Dr. Willinger summarized recent  studies  assessing risk to infants  sleeping prone or side, and recent activities related to “back-to-sleep” interventions. Activities focusing on behavioral change have included national surveys, longitudinal population based surveys, international population-based studies in Australia and England, and focus groups among the African American community to assess causes of lower effectiveness of interventions within this community. Data and results to date have shown no adverse health outcomes from having babies placed to sleep on their backs

Dr. Willinger reported that the Sudden Infant Death Syndrome (SIDS) rate had declined by 40% overall in the two years following implementation of the American Academy of Pediatrics-supported “Back-to-Sleep Campaign” in 1994. However, the relative risk disparities among the African American and Native American communities compared to whites remained constant at 2.0 and 3.0, respectively, during this period. Outreach and education efforts will continue in an effort to expand to those populations not yet reached.

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V.    ACTIVITIES OF THE NIH OFFICE OF BEHAVIORAL & SOCIAL SCIENCES RESEARCH – Dr. Raynard Kington, Director

The OBSSR was created by Congress in 1993 to work in collaboration with NIH Institutes. Dr. Kington distributed the 1999 Executive Report of the OBSSR. Data indicate that poor and minority communities continue to demonstrate wide disparities in measures of health outcomes.

Ensuing discussion included the issue of informed consent and Dr. Kington reported that OBSSR stresses the importance of these issues in reagrd to social and behavioral research, particularly at the community level. It was pointed out that including questions regarding sleep in subsequent surveys could enhance opportunities for follow-up and collaboration.

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VI.   ACTIVITIES OF THE NATIONAL SPACE BIOMEDICAL RESEARCH INSTITUTE – Dr. Charles Czeisler

Dr. Czeisler reviewed efforts to address the unique challenges to the wake-sleep cycle and circadian rhythms as they pertain to space travel. An open solicitation (RFP) for developing effective countermeasures and adaptation strategies has funded 8 projects with total aggregate funding in the first year of $2 million. Dr. Czeisler indicated that there is a specifc interest in sleep research within NASA and that opportunities for collaboration exist.

There was discussion regarding sleep and ground crews, and Dr. Czeisler indicated that some consideration of these issues would be considered in subsequent projects.

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VII.  ADVISORY BOARD RESEARCH DIRECTIONS – Open Discussion Led by Dr.  White

General discussion among Board members led to the following general consensus regarding priorities and initiatives for sleep research:

• Sleep and Learning (memory and plasticity)

• Mice models – Combine phenotyping and genetic manipulation via PA or possibly PPG.

• Follow up on the Restless Legs Syndrome PA to see if an RFA is needed

• Define “normal” sleep in humans, consistent with a large study as proposed by Drs. Roth and Rosbash. Would not occur without NIH initiative.

• Look at issues related to alertness

• Need to assess day-to-day activity

• Insomnia and Clinical (cohort) Trials in collaboration with NIMH, NIA and AASM

• Effects of chronic sleep deprivation on physiology (also circadian disruption

• Sleep Academic Awards – How do we move the process along after the grant project period ends?

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VIII. CLOSED SESSION – SDRAB MEMBERS ONLY

Dr. Emmanuel Mignot was elected Advisory Board Chair for the period July 2001 through June 2002.

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IX.   NCSDR RESEARCH PLAN REVISION – Dr. Carl E. Hunt

Dr. Hunt outlined preliminary plans for revision of the NCSDR Research plan. A Task Force will be appointed during the summer of 2001. They will be charged with reviewing the original 5-year plan, which objectives have been accomplished and identifying which objectives have not yet been accomplished but still are important, and identifying gaps in our knowledge that need to be included in the new 5-year plan. The Advisory Board will have a role in reviewing this plan, as will representatives from across the sleep research community.

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X.    SLEEP ACADEMIC AWARDS (SAA) PROGRAM UPDATE – Dr. J. Catesby Ware

Dr. Ware provided an update on current activities among Sleep Academic Award Grantees. There was some discussion regarding the SAA “legacy” once the respective project periods have ended. There was general agreement that one major objective would be to make student and resident sleep-related research a primary focus. Several current SAA projects were highlighted as potential models for continued interest.

XI.   EDUCATION SUBCOMMITTEE UPDATE – Dr. Richard Millman, Sue Rogus, Ellen Sommer

Ms. Rogus discussed the high school sleep curriculum, activities focusing on children ages 7 to 11, the Physicians’ Working Group on Sleepiness in Adolescents, and Latino sleep education activities.

A joint project of NCSDR and the NIH Office of Science Education, the high school sleep curriculum has been developed for 10th grade biology classes.  Field-testing of the sleep curriculum at eight sites has been completed.  Significant improvements from pretest to posttest were observed at six of the eight sites, and specific recommendations for revisions were obtained.   Final revisions are currently underway. This curriculum will be printed and distributed, and teacher training conducted during 2002.

A working group, co-chaired by Dr. David Kaplan of the American Academy of Pediatrics (AAP) and Dr. Millman, is being convened to examine the science base regarding healthy sleep for adolescents and the adverse effects of acute and chronic sleep deprivation.  Based on this review, the group will recommend key messages for physicians, especially pediatricians, regarding the etiology, consequences, recognition, and treatment of sleepiness in adolescents, as well as the role of the pediatrician in the detection and management of sleepiness and any underlying sleep disorders in the adolescent patient. This partnership with the AAP will be critical to the successful dissemination of the messages as well as achieving the optimal impact on pediatric practices. 

An effort is under way to incorporate sleep education activities into NHLBI minority outreach programs. The “Facts About Sleep Apnea” document has been translated into Spanish and is now undergoing final review. At a session to be presented during the national convention of Latino lay health educators, or Promotores, information about sleep and the major sleep disorders will be discussed, including perceived barriers to reaching Latinos regarding sleep education. Other education and information options, including the usefulness of translating the “Garfield Star Sleeper Fun Pad” into Spanish, will also be explored

Ms Rogus provided an update on the new Garfield campaign. A back-to-school campaign is planned for late summer to prime the media for messages about sleep for young audiences.  Partnerships crucial to the success of this 5-year campaign include PAWS, Inc. (the studio that produces Garfield), the American Academy of Pediatrics, the American Academy of Sleep Medicine, the Capitol Children’s Museum, and the National Association of Elementary School Principals.

Ms. Sommer indicated that in preparation for the launch of this campaign for children ages 7-11, focus groups and other research establishedGarfield to be an effective “spokescat” for the importance of good sleep, in part because children know Garfield and that “sleep is [his] favorite exercise.”

In late February 2001, the campaign was launched at a press conference at the Capital Children’s Museum in Washington, DC.  Participants included Dr. Lenfant and Dr. Hunt, as well as representatives from PAWS, the National Association of Elementary School Principals (NAESP, and the World Public Charter School.  The top three winners from the comic strip contest were present and each received an original completed comic strip with their winning entry drawn by Jim Davis.  [Ms. Sommer showed the three winning strips.] The three contest winners were Xavier Powers, age 9, Alliance, OH; Katie Seamon, age 10, Pittsburgh; and Danny Strohman, age 8, Duluth, MN.

The press conference was covered by national media including USA Today, CNN, “Good Morning America,” the “CBS Early Show,” and Univision, as well as more than 200 local TV stations in 39 states in all 10 top media markets, with a total estimated audience of 16 million.   An audio news release distributed in conjunction with the press conference was broadcast on more than 550 radio stations, with an estimated 4.3 million listeners, and stories ran on such major Web sites as MSNBC.com, WebMD, CNN.com, YAHOO, CBS HealthWatch, and Black Living; the estimated audience of 115 million site visitors.  The total audience for the launch coverage was estimated at 150 million.  [Ms. Sommers showed a brief clip of CNN’s coverage.] 

The Garfield Web page has hosted about 20,000 people since its launch in conjunction with the press conference, with about one-third of those people making a return visit. The launch activity has generated many followup press inquiries, and outreach to the media has continued.

A Back-to-School Campaign has been launched to generate public interest in back-to-school issues and to generate media attention, including online media that cover children’s, parent’s, and women’s issues, and professional educational and targeted general consumer publications. A special effort is being made to reach minority publications.  

As part of this campaign, a public service announcement (PSA) in 2 lengths (15 and 30 seconds) has been distributed to more than 1,000 cable and broadcast networks, regional cable networks, local television stations, and local cable systems that provide children’s programming.  The 30-second PSA was played. A feature article is being provided to 10,000 small to medium newspapers nationally. NHLBI/NCSDR web site enhancements will include the new PSA, and we are discussing with PAWS, Inc. the possibility of adding a new interactive Garfield game online during the back-to-school season.

In response to a query about evaluating the impact of this campaign on children’s sleep, Ms. Sommer responded that baseline data do not exist, so impact will be difficult to measure except through anecdotal information.  Process outcomes will be looked at, as well as the extent to which the targeted audiences have been reached.

In response to a question about patient groups partnering with the NHLBI on the Garfield campaign, Ms. Sommer said they would welcome that.  The arrangement with PAWS is such that Garfield cannot be associated with a sleep disorder, but information about sleep disorders can be transmitted without reference to Garfield.

There was general consensus that one of the desired long-term outcomes of the Garfield campaign was to achieve improvements in sleep-related knowledge and behavior that will continue as the children become teenagers. Current strategies designed to help achieve both current and long-term goals might include:

    Reaching out to local pediatric organizations and school boards;

    Working with the American Academy of Pediatrics to educate children, parents, and pediatricians about sleep and sleep disorders. 

         Communicating with teachers and other school professionals, and distributing educational materials targeted to teachers and parents. A “tip sheet” distributed through the National Association of Elementary School Principals might be particularly effective.

In response to a question about the high school biology curriculum, Ms. Rogus stated that the details of its dissemination are still to be determined in conjunction with the NIH Office of Science Education.  Teacher training on the use of this curriculum will be provided.  Printed copies of the curriculum will be available, as will Web downloads; distribution will be determined shortly.  Training sessions at teachers’ national and regional conferences will focus on the ease of incorporating the sleep curriculum into the regular science curriculum. The curriculum is a 5-day module, with each day’s session lasting 45 minutes, and begins with students keeping a sleep diary the week before the class starts.  The sleep curriculum requires additional effort on the teacher’s part, but the field test was extremely positive and the curriculum was well liked by both teachers and students.

Representatives from Professional and Patient Groups in attendance were invited to provide updates of their respective activities: 

American Thoracic Society (ATS) (Dr. Robert Basner):

Sleep credentialing for pulmonologists is becoming a major issue, engendering such questions as what pulmonologists need to know in order to be credentialed in sleep medicine, what training programs need to cover, and who will govern the sleep credentialing program.  The ATS would like to partner with anyone interested in sleep credentialing.

American Sleep Apnea Association (ASAA) (Ms. Christin Engelhardt):

The ASAA is working more closely with the ATS as part of an advisory roundtable. Possible publications for education on sleep issues include a sleep apnea fact sheet in Spanish and information targeting bed partners.

Better Sleep Council (Ms. Andrea Herman):

The Better Sleep Council is beginning a strong sleep education initiative for the mattress retail association, representing 12,000 outlets in the United States.  A curriculum is currently being devised, the goal of which is to engage the public in a conversation about sleep. Consumers are increasingly articulate about sleep issues, but mattress sellers are still just talking about “the box.” In response to a suggestion to have sleep pamphlets available at bedding stores (Jordan’s of Boston sells beds and produces advertisements about getting enough sleep), Ms. Herman answered that publications are available but the challenge is how to get retail staff educated about sleep problems. Consumer research shows that when people are asked what factors disturb their sleep, the actual mattress is at the bottom of the list; stress is the leading factor. Conducting surface research would also be helpful.  Regardless of why someone goes to a store to buy a mattress, an opportunity to talk about sleep is presented.

Sleep Foundation (NSF) (Mr. Darrell Drobnich):

The NSF formed a partnership with one leading mattress manufacturer regarding sleep and sleep disorders; brochures will be appearing in their retail outlets.  A 2-day workshop, “Public Health Surveillance for Morbidity and Mortality Associated with Sleep Deprivation and Sleep Disorders” will be held September 24-25, 2001, in Washington, D.C.  The purpose of this workshop is to review and evaluate existing data and surveillance systems in the areas of transportation, the workplace, and public health.  The NSF has launched a new free monthly electronic newsletter, “NSF Alert”, to supplement its quarterly publication, “SleepMatters.”

Narcolepsy Network (Mr. Robert Cloud):

A national annual patient conference will be held in October 2001; a featured speaker will be Dr. Hunt.  About 200 patients and family members are expected to attend.  The Narcolepsy Network is working with the NSF on the driver’s license issue.  Thanks to a grant from an estate, Narcolepsy Network now has some minimal funds to support research; a request for applications is currently available on its Web site. The grants will be small but one of the categories is a supplement to an ongoing research grant so as to add narcolepsy to the protocol. Still of interest is NCSDR’s continuing support of education activities by patient groups; patient groups are available to assist in the goals of the NCSDR.

Restless Legs Syndrome Foundation (RLSF) (Ms. Georgie Bell):

Four research grants have been awarded this year to three grantees and one postdoctoral fellow.  Ms. Bell provided abstracts of the grant information and copies of the program announcement.  Regional education programs are being conducted for client constituents around the country.  Copies of RLSF’s updated brochure were provided, as was a copy of a medical bulletin that discussed the latest in medical treatment for restless legs syndrome.  This disorder is becoming more common; discussion of it should be part of physicians’ office visits with patients.

American Academy of Sleep Medicine (AASM) (Mr. Jerome Barrett):

In the past, the AASM translated some of its brochures into Spanish but they were not popular. The sleep apnea brochure will soon be available in Spanish and it is anticipated that this brochure will be well utilized.  The current issue of the journal, Sleep, is available in real time on the Academy’s Web site, as are all 23 prior volumes. The Academy’s research foundation has funded six grants in the past and hopes to fund three or four additional grants each year. The Associated Professional Sleep Societies meeting in Chicago in early June was very successful, with more than 4,000 people attending. Next year’s meeting will take place June 8 to 13 in Seattle. 

XII. OTHER BUSINESS

Dr. Carl Hunt recognized Dr. Paul Nichols (NINDS) as a new ex officio member of the Advisory Board, and announced that Ms. Carol Bell-Anderson had resigned her position on the Board with 1 year remaining in her term. Dr. Hunt also announced Dr. Mignot’s election as Advisory Board Chair for the next year.

Dr. Hunt then recognized outgoing Board members, Drs. Millman, Rosbash and White. Each outgoing member received a certificate of appreciation from Dr. Lenfant and a Garfield doll. Dr. Hunt also recognized Dr. Michael Twery for his service as Acting NCSDR Director with a Garfield doll.

XIII.  ADJOURNMENT

Being no further business, the meeting was adjourned at 3:10 p.m

XIV.  FUTURE SLEEP DISORDERS RESEARCH ADVISORY BOARD MEETING

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XV.   CERTIFICATION

We certify that, to the best of our knowledge, the foregoing minutes are accurate and complete.

David P. White, M.D., Chair
Sleep Disorders Research Advisory Board 

Carl E. Hunt, M.D.,  Executive Secretary
Sleep Disorders Research Advisory Board 

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