NATIONAL CENTER ON SLEEP DISORDERS
NATIONAL HEART, LUNG, AND BLOOD INSTITUTE
Sleep Disorders Research Advisory
Board Meeting Minutes
April 10, 2000
The twelfth meeting of the Sleep Disorders Research
Advisory Board was convened on Monday, April 10, 2000, in Building 45, Natcher
Conference Center, National Institutes of Health (NIH), Bethesda, Maryland. The
meeting was open to the public from 8:30 a.m. to adjournment at 4:40 p.m. Dr.
David White presided as Chair.
TABLE OF CONTENTS
Call to Order and Opening
Review of Confidentiality and Conflict of
Report of the Director
Sleep Academic Award
Comments by Director, NHLBI
NINDS Current Plans and Efforts in Sleep
Sleep Related Activities In the Department of
Future Sleep Disorders
Research Advisory Board Meeting
BOARD MEMBERS PRESENT:
Ms. Carol Bell Anderson
Dr. Mary Carskadon
Dr. Carol Landis
Dr. Israel Lederhendler (ex-officio)
Dr. Claude Lenfant
Ms. Sandra McGinnis
Dr. Emmanuel Mignot
Dr. Andrew Monjan (ex-officio)
Dr. Michael Rosbash
Dr. Fred Turek
Dr. Michael Twery (ex-officio)
Ms. Carol Walker
Dr. David White
Dr. Marian Willinger (ex-officio)
BOARD MEMBERS ABSENT:
Dr. Gregory Belenky
Dr. F.J. Brinley, Jr. (ex-officio)
Dr. James Everett, Jr.
Mr. Morris Lyons
FEDERAL EMPLOYEES PRESENT:
Fischbach, Director, NINDS
Dr. Timothy Hays, NIMH
Dr. Karin Helmers,
Ms. Mary Lawrence, NCSDR
Dr. Charlotte McCutchen, NINDS
Thomas Raslear, DoT
Ms. Sue Rogus, NHLBI
Ms. Ellen Sommer, NHLBI
Mr. David Wade, DoC
LIAISON MEMBERS PRESENT:
Dr. Harold Gordon
Dr. Mary Leveck
Dr. Roger Rosa
LIAISON MEMBERS ABSENT:
Dr. Frank Sulzman
Dr. Ellen Witt
Dr. Jesse Blatt
Dr. Daniel Chapman
Ms Kathy Creighton
Dr. Sony Sobrian
MEMBERS OF THE PUBLIC PRESENT:
Balkam, Restless Legs Syndrome (RLS) Found.
Mr. Jerry Barrett, American
Academy of Sleep Med. (AASM)
Dr. Robert Basner, American Thoracic Society
Ms. Pat Britz, National Sleep Foundation
Dr. Daniel Buysse, AASM
Mr. Bob Cloud, Narcolepsy Network
Mr. Darrel Drobnich, NSF
Christin Engelhardt, American Sleep Apnea Assoc.
Mr. Richard Gelula, NSF
Dr. Susan Harding, Sleep Academic Award Program
Ms. Cate Murray, RlLS
Mr. Nathanial Polster, HLB Newsletter
Ms. Becky Ramsing,
Prospect Associates, Inc.
Dr. Susan Redline, Sleep Heart Health Study
Dr. Arthur Strauss, Sleep Disorders Dental Society
Ms. Sue Shero,
Prospect Associates, Inc.
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TO ORDER AND OPENING REMARKS - Dr. Michael Twery
Dr. Michael Twery, Acting Director, National Center on
Sleep Disorders Research (NCSDR) called the twelfth meeting of the Sleep
Disorders Research Advisory Board to order at 8:30 a.m. on April 10, 2000. Dr.
Twery informed the Board of Dr. Kiley's promotion to Director, Division of Lung
Diseases, National Heart, Lung, and Blood Institute (NHLBI). A search for a
replacement was underway, and that he would be Acting Director, NCSDR, during
the interim. This change in leadership does not affect the status of the NCSDR
within the NHLBI. Board members and Community partners were encouraged to
contact him with questions or suggestions related to the Board or NCSDR
activities. Dr. Twery reviewed the meeting agenda and the contents of the
meeting Briefing Book.
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OF CONFIDENTIALITY AND CONFLICT OF INTEREST PROCEDURES - Dr. Michael Twery
Dr. Twery presented the policy on confidentiality and
avoidance of conflict of interest.
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III. REPORT OF THE
DIRECTOR - Dr. Michael Twery
This report presented a summary of NIH sleep related
activities for fiscal year (FY) 1999. Approximately $119 million was awarded by
the eight Trans-NIH Institutes and the National Center on Research Resources
(NCRR) across the NIH for sleep research in FY99. This represents an increase
of about 18% over the 1998 total for sleep related research. The Center also
tracks the number and status of sleep applications received across NIH. For
1999, the total number of sleep related applications received across NIH was
269 including 212 new applications. A total of 112 applications, or
approximately 41%, were funded, compared to approximately 25% of applications
received being funded in 1993. The amount of sleep research funding by the
Trans-NIH Institutes and the NCRR has increased approximately 57% between 1993
and 1999. Over the same period, the number of applications received at these
Institutes has been sustained at about 230 - 250. Dr. Twery highlighted the
relationship of the NCSDR to other NIH Institutes and Federal agencies and
sleep education activities. The NCSDR website was launched in January and is
accessible from the NHLBI web page. A comprehensive list of sleep related
scientific initiatives was reviewed.
New and continuing activities for FY00 included:
Scientific activities: The RFA on Genomic
Applications for Heart, Lung, and Blood Research (HL-99-02) had a receipt date
of March 14, 2000; RFA on Oxygen Sensing During Intermittent Hypoxia will be
released soon; NIH Sleep Training Grant Program (PA-97-064) and Sleep Heart
Health Study (SHHS) are still active, including a newly awarded SHHS
Coordinating Center (HL-99-014); Nocturnal Asthma, Chronobiology and Sleep RFA
(HL-99-011) will be awarded in FY00.
Several meetings have been held or are scheduled for
FY00, including: The International Sleep and Breathing Symposium; The NASA
Neurolab Symposium; NIAAA Workshop on Sleep and Alcohol; NHLBI/NIA Workshop:
Sleep and Host Defense Mechanisms; Society for Neuroscience (SFN) Symposium on
the Neurobiological Mechanisms Regulating Sleep, and the Sleep and Circadian
Biology DataBlitz; NHLBI Workshop: Research Training and Career Development;
National Institute on Neurological Disorders and Stroke(NINDS)/NIH workshop on
the Dopamine Connection in Restless Legs Syndrome (RLS), Periodic Limb Movement
Disorder, Parkinsonism and Narcolepsy; NHLBI Neurobiology of Sleep and Sleep
Apnea Specialized Centers of Research RFA Coordination meeting; and, NHLBI
Sleep Academic Award (SAA) RFA Coordination meetings.
Future Activities will include a symposium at the
Society for Behavioral Medicine meeting on Sleep Research: New Frontier for
Behavior Medicine; American Thoracic Society (ATS) noontime session on the
SHHS; a workshop on SAA Faculty Development at the Association of Professional
Sleep Societies (APSS) Meeting; and an RFA Coordination Meeting on Obstructive
Sleep Apnea in Children.
Collaborative activities: The SFN
DataBlitz/mini symposium will have multiple sponsors this year;
Presentations/workshops will be held at the annual meeting of ATS, APSS, and
SFN; the expert panel report Drowsy Driving and Automobile Crashes
was developed with the National Highway and Traffic Safety Administration;
Workshop recommendations from the NCSDR/NIH National Science Foundation/Center
for Biological Timing Workshop What is Sleep? What is it Good For?
will appear in the April 2000 issue of the Journal of Biological Rhythms;
Agency for Healthcare Research and Quality Evidence Based Report on Sleep Apnea
Diagnosis; National Research Council/Institute of Medicine Workshop:
Sleep Needs, Patterns, and Difficulties of Youth; NCSDR continues to
build and strengthen collaborative activities with professional and voluntary
organizations, maintains active and ongoing collaboration with other NIH
Institutes, and co-ordinates research activities with the Trans-NIH Sleep
Research Coordinating Committee.
Dr. Twery recognized retiring Board members Dr. Fred
Turek, Ms. Carol Walker, and Mr. Morris Lyons. On behalf of the NHLBI, NCSDR,
and other Board members, he expressed appreciation for their service and
contributions to planning sleep programs during their tenure. The Board was
invited to send suggestions for the replacement of retiring members.
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ACADEMIC AWARD: PROGRESS AND PLANS FOR LONG-TERM CONTINUATION OF SLEEP
EDUCATION INTERVENTIONS IN MEDICAL SCHOOL - Dr. Susan Harding
The SAA Program was initiated in 1996 to improve the
quality of sleep medicine education nation- wide. The full program consists of
20 sites, that will meet regularly until 2003 when formal grant support will
end. The goals of the SAA program are to encourage curricular development and
research in medical school; to increase the knowledge and skills of medical
professionals; to develop and evaluate the impact of sleep curricular models
that can be adapted and institutionalized by medical schools nationwide; and to
promote an institutional environment that encourages appropriate sleep medical
care as more is learned about sleep disorders.
Dr. Harding reviewed the accomplishments of selected
SAA sites in developing mechanisms to incorporate sleep medicine into the
medical school curricula such as increased student contact with patients having
sleep disorders; developing sleep related clinical research; examining sleep
knowledge and attitudes among physicians and trainees; and increasing program
publications on sleep medicine topics.
The SAA program has four working groups to coordinate
their efforts in the following areas: Curriculum and Resource Development;
Dissemination; Evaluation; and Faculty Development. Each Awardee has a working
group primary assignment, but interacts with all group efforts.
The Curriculum and Resource Development Group is
working toward the development of a model curriculum in sleep and
chronobiology. Currently there is a publication in press in the journal
Academic Medicine. Future goals include developing a set of learning objectives
for sleep medicine content so that learning objectives will be available for
the curriculum model. A key component of the Dissemination Working Group is the
Education Resource Development and Dissemination Program, recently named the
Medical Education in Sleep (MEDSleep) project. Future goals include
disseminating strategies to add sleep topics into the medical school curriculum
and developing outreach programs for non physician health care professionals.
The Evaluation Working Group is cataloguing the evaluation needs of SAA
awardees, such as establishing quality assurance for existing curricular tools;
evaluating MEDSleep materials; establishing liaisons with other organizations;
and establishing a publications subcommittee.
The Faculty Development Working Group has organized a
faculty skills workshop for sleep medicine educators. This workshop was first
held at APSS in 1999 and a second workshop is planned for APSS this year.
Future goals include developing a mentorship network and holding similar
workshops for other professional medical societies.
Dr. Harding discussed how to continue SAA educational
programs beyond the time line of grant support for the individual awardees as
well as some program wide solutions in addition to MEDSleep such as: developing
transferable products, using state of the art technology; appointment of a
Sleep Education Committee by the AASM; increasing SAA program visibility with
publications; liaisoning with other societies to position educational curricula
within courses; increasing sleep medicine topics on Board exams; and
incorporating sleep medicine topics in widely used medical textbooks.
SAA awardees are a diverse group representing several
professional societies including 6 sleep societies, 6 medical education
societies and 15 other medical societies.
The MEDSleep project is a partnership with the
American Academy of Sleep Medicine (AASM) to catalogue, evaluate, and
disseminate educational products produced by the awardees. Currently, thirty
eight products have been catalogued, with 12 of these set for the initial AASM
website launch in a variety of formats. A vignette and problem based learning
case bank are available including topics on insomnia and sleep disordered
breathing, restless legs syndrome, narcolepsy, pediatric sleep topics,
insufficient sleep, depression, autonomic dysfunction, and nocturnal angina.
Group discussion after the presentation focused on how
these objectives will continue once funding runs out. Dr. Harding noted
formation of an AASM Sleep Education Committee and an AASM Sleep Membership
section will help insure the longevity of this effort after funding has
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COMMENTS BY DIRECTOR, NHLBI - Dr. Claude Lenfant
Dr. Lenfant addressed questions from the Board
regarding the representation of sleep related research among applications
received in response to RFA HL-99-024, Genomic Applications for Heart, Lung,
and Blood Research; the concept of piggy backing studies and
maximizing information gathered during longitudinal studies and clinical
trials; the continued productive interaction between NHLBI and private
Foundations. Such interactions are encouraged, especially in an effort to
What has historically worked well after funding for an
Academic Award program is for professional societies to collaborate with the
awardees in ongoing efforts toward achieving the program goals. For the SAA,
the intent is that those who received the grants will foster the awareness of
the need for sleep in the curricula of their Institutions. The real benefits
will come much more from the community than the Institutes grant.
Dr. Lenfant spoke briefly about the search for a
replacement for Dr. Kiley as Director, NCSDR. The vacancy announcement will
close May 1. A search committee has been assembled and will convene shortly
thereafter. The timing of the appointment of the selected candidate will depend
on circumstances of the candidate. Dr. Lenfant thanked Dr. Twery for assuming
the position of Acting Director, and also those who have communicated
recommendations for members of the search committee and for a new Director for
NCSDR. Dr. Lenfant concluded by expressing his appreciation to the outgoing
Board members for their service on the Advisory Board.
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Update of NCSDR Education Activities - Ms. Sue Rogus
Ms. Rogus reported on the restless legs syndrome (RLS)
project. The report Restless Legs Syndrome: Detection and Management in
Primary Care is now complete and has just been printed. Members received
a copy of the report in their briefing books. The manuscript has been accepted
by American Family Physician and will be published sometime in the next several
months. Dissemination of the report will be done through limited direct mail to
target audiences, the NCSDR Web site, exhibits, partnership activities, and in
response to requests. The RLS Foundation will print its own copies of the
report and disseminate it through its existing channels to further the reach of
The NCSDRs Youth Initiative is a major,
long-term project that targets various audiences, including high school
students and teachers, and children 7 to 10 years old. The Awake at the
Wheel materials developed in conjunction with Scholastic, Inc., targeting
high school students and teachers, are now on the NCSDR Web site. The
supplemental science curriculum, which includes the biology of sleep and its
relationship to health, is being developed in conjunction with the NIH Office
of Science Education. This component of the project is slated to be completed
in the fall of 2001. The youth initiative seeks to focus on children at a
younger age (7 to 10 years old) to instill an appreciation of the importance of
sleep. The NCSDR has partnered with the Geppetto Group in New York, an agency
that specializes in research with children. The Geppetto Group has conducted
focus group testing to better understand childrens attitudes about sleep.
Based on the focus group results, a preliminary concept was developed. The
concept is that getting enough sleep will help you do your best in whatever you
dothis relates to both academics and sports. In addition, the NCSDR will
be entering into a major 5-year program with PAWS, Inc., that will involve
using the character Garfield as a sleep spokescat.
Additional information about the PAWS project will be available at the next
The NCSDR Web site was launched recently and includes
four main areas: Research, Professional Education, Patient and Public
Information, and Communications. The site can be found at
Future NCSDR Education Activities
Ms. Rogus stated that a possible future activity is
the development of a web-based continuing medical education (CME) program. The
product would be based on existing NCSDR publications on sleep apnea, insomnia,
problem sleepiness, and RLS. A mechanism for including information about
narcolepsy in the CME package would be explored.
Dr. Richard Millman, chairman of the education
subcommittee, stated that other future topics for consideration include
development of a document on medications and sleep, sleep disorders in
children, and narcolepsy. He added that outside support is often necessary to
address issues. Ms. Rogus stated that defining the scope of some of these
potential projects could be problematic. For example, virtually all medications
affect sleep in some way, and it would be difficult to narrow the focus
sufficiently. Dr. Millman added that sleep disorders in children may also be a
problem because numerous topics and disorders could be covered.
Ms. Rogus stated that reaching minority audiences with
information about sleep and sleep disorders will need to be a consideration for
future activities. The goal of eliminating health disparities is a priority
identified by the Department of Health and Human Services. To begin to address
the issue of disparities, it is helpful to look at data that are available now.
Ms. Rogus asked the partner sleep organizations to reflect on what they have
done in the past and suggest possible future activities to reach minority
Sleep Apnea and Cardiopulmonary Disease in Minority
Populations [Dr. Susan Redline]
Dr. Redline, a respiratory epidemiologist, reported on
gender and ethnic differences in prevalence rates and risk factors for sleep
apnea, especially African Americans. Recognized health concerns among African
Americans include hypertension and cardiovascular disease, asthma, and learning
and behavioral problems.
Dr. Redline reviewed the impact of obstructive
sleep apnea (OSA) on health:
- OSA is a risk factor for cardiovascular
- Asthma may be related to apnea.
- OSA can impair quality of life by causing
- Neurological functions (especially those requiring
sustained attention) are impaired.
- Normal growth and development in children may be
affected by OSA.
Dr. Redline referred members to an upcoming article in
the Journal of the American Medical Association. The citation is: Nieto FJ,
Young TB, Lind BK, et al. Association of sleep-disordered breathing, sleep
apnea, and hypertension in a large community-based study. JAMA
A family study in Cleveland with a population that is
50-percent African American showed an overall trend for an increased prevalence
of apnea in blacks younger than age 18. The increased prevalence becomes less
pronounced with increasing age. The reason for this trend is unknown, but it
may be due to survival bias. Data from the Sleep Heart Health Study, which
includes more than 6,400 adults from 10 sites with a large population of Native
Americans, show an increased prevalence of apnea that corresponds to an
increasing body mass index in all groups (whites, African Americans, and Native
Americans). Non-obese African Americans are at a higher risk for apnea compared
with non-obese whites.
Dr. Redline stated that a question to be examined is
whether the severity of OSA is greater in African Americans. Two recent
articles have addressed this question. A 1995 study by Ancoli-Israel showed
that among 346 elderly African Americans, an apnea-hypopnea index (AHI) of
greater than 30 was more common than in whites (odds ratio 2.6; 8 versus 17
percent). In a 1999 study by Stepanski, among 198 children referred for sleep
apnea evaluation, African Americans were found to be more hypoxemic (80-percent
versus 90-percent saturation). It is not clear whether the disease is more
severe in the African American group or whether the children with more severe
symptoms were referred.
Risk factors for OSA tend to differ among Caucasians
and African Americans. In Caucasians, older age and a small, bony airway
(bracheocephaly) are risk factors, whereas younger age and more upper airway
soft tissue place African Americans at higher risk for OSA. The genetic modes
of transmission also appear to differ among Caucasians and African Americans.
Obesity and male gender are risk factors in both groups.
Recent data from a Cleveland cohort of 9-year-old
African American children with apnea showed a significant (7mm) increase in
systolic blood pressure. Whether the higher blood pressure levels are explained
by obesity or apnea is an area of study.
African Americans with an apnea/hypopnea index (AHI)
greater than 5 also have significant decrements in quality of life compared
with those an AHI less than 5. African Americans with apnea are twice as likely
to fall asleep as those without apnea.
Dr. Redline offered the following summary:
- There appears to be an increased prevalence and
severity of OSA among young African Americans.
- There is an increased prevalence of severe OSA
among older African Americans.
- The impact of the risk factors differs among
various population groups.
- Snoring may be under-reported in some groups. (For
example, young African American males are the least likely to report/know their
Dr. Redline briefly discussed treatment issues for
minorities with OSA. There are no data that address the efficacy of surgery or
oral appliances in minority groups. However, differences can be anticipated due
to craniofacial variances. In addition, compliance with continuous positive
airway pressure (CPAP) in subgroups is unknown. We need to examine how to
optimize adherence accounting for cultural and societal factors. Recognition of
OSA in minorities from the patient perspective is limited due to the following:
- Under reporting of snoring among African American
- Snoring viewed as a cultural norm.
- The multifactorial nature of sleepiness.
(Environmental stresses play a large role.)
- Competing health and social problems. (Sleep
disorders may appear relatively insignificant compared with other
- Limitations of some health insurance programs and
poor access to referral centers.
Recognition of OSA may be limited from the
physicians perspective due to the following:
- The need to treat numerous competing health and
- Snoring and sleepiness not articulated as
- Lack of awareness among health care professionals
about the risk factors for OSA and its association with other health
- Lack of data on efficacy of tonsillectomy and
adherence to CPAP.
Dr. Redline outlined suggestions for further work with
sleep apnea in minorities:
- Assess the specific impact of OSA on health and
functioning in minority groups and characterize response to treatments.
- Assess the efficacy of and adherence to OSA
therapies among minorities.
- Identify cultural and societal issues surrounding
sleep apnea and sleep disorders.
Dr. Redline suggested that a good first step would be
to address these issues by reviewing existing sleep health promotion materials
with an emphasis on cultural and societal sensitivities, identifying which
high-risk groups are being targeted (or not targeted), and assessing the
receptivity and effectiveness of existing materials. Experience from other
programs (such as obesity, hypertension, and asthma) can be examined and
piggybacked to programs already in progress.
Discussion and Questions
Dr. Millman asked Dr. Redline to comment on the issue
of getting minorities to come in for sleep studies and evaluations. Dr. Redline
said that some groups are difficult to reach, but they are generally open to
hearing messages. In some cases, it takes a lot of intensive work. A member
added that in a veterans hospital with a large African American
population, a simple step of adjusting CPAP masks to better fit facial
structures improved compliance significantly.
In response to a question, Ms. Rogus stated that the
NHLBI has specific minority programs and that programs such as asthma, obesity,
and high blood pressure also have aspects that focus on minority issues. Dr.
Redline added that the Robert Wood Johnson Foundation is also interested in
Dr. Millman asked the sleep organizations to report
any activities or future ideas to address minority issues. A representative of
The American Sleep Apnea Association (ASAA) stated that ASAA focuses on snoring
and falling asleep as risk factors for OSA in its publications because the
intent is to reach a broad audience. In general, physicians are not looking for
sleep apnea in their patients and need basic information rather than
information tailored for specific groups. It may also be that physicians who
treat minority populations do not attend national meetings where information is
distributed. Some materials have been translated into Spanish with funding from
the Robert Wood Johnson Foundation. The ASAA is working with corporate sponsors
to explore potential funding for minority-related research. Dissemination of
information through the Combined Federal Campaign health fairs for Federal
employees, which minorities attend, was suggested.
A question was raised about whether other NHLBI
programs work with foundations to target minority audiences. Ms. Ellen Sommer
replied that the NHLBI is partnering with other organizations in a number of
different areas to increase synergy and better utilize information. For
example, the NHLBIs National Asthma Education and Prevention Program
funds seven community-based coalitions and plans to fund additional coalitions,
as is the Robert Wood Johnson Foundation. The two organizations are working
together to explore joint activities to support both sets of coalitions. She
also stated that the NHLBI is working with organizations like the SPRY
Foundation, which have good community-level networks. Overall, the NHLBI is
increasingly working with other groups to get information into communities.
In response to a question about the type of outcome
the NHLBI is seeking relative to addressing minority audiences, Ms. Sommer
stated that the NHLBI education programs initially focus on creating awareness
about an issue in the community and encouraging people to recognize symptoms
and get help. So, a central function of the NHLBI education programs is to
develop awareness activities for the target audience and complement that with
the education of medical professionals.
In response to a question about why it has been
difficult to get information to minority audiences, Ms. Sommer stated that the
NHLBIs education efforts are based on the latest science and that only
now are there some data on sleep disorders in minorities that provide a base
for such efforts. In the future, culturally sensitive activities based on the
identified needs of various groups can be addressed.
Dr. Millman stated that the public probably knows more
about sleep apnea than physicians do because there is information about it in
lay publications. We need to continue to educate the general population and
physicians while not ignoring minority populations. Currently, there is little
motivation by sleep centers to get sleep materials for minorities.
In response to a question about whether a process
exists for selecting the best organization to partner with in targeting
minority populations, Ms. Sommer stated that the NHLBI usually looks for an
issue area that is not being addressed by other organizations and increasingly
is targeting communities at highest risk. Then it looks for partners that can
help address the issues in those communities. She added that often the NHLBI is
approached by organizations who are interested in doing a variety of
activities. In terms of sleep and sleep disorders, the NHLBI is not aware of
much current activity directed toward minority audiences, and the NHLBI would
like to encourage activity, as well as get involved in this area.
A comment was made that a recent grant solicitation
from the Robert Wood Johnson Foundation addresses under served populations and
chronic diseases. Dr. Millman noted that the Board must identify future
directions before identifying potential partners. We need to know what we want
our partners to do.
A member stated that NIH strategic plans are now being
refined to identify activities to decrease health disparities. An NIH committee
oversees this process. Now is a very appropriate time for this Board to address
minority issues. Dr. White stated that Dr. Redlines idea for a workshop
to address sleep disorders in minority populations is a good one. He asked the
group how this and other ideas could be operationalized. One answer is that a
proposal could be brought to the next Board meeting. Ms. Rogus, Dr. Millman,
and Dr. Redline will work on a plan to bring to the Board. Ms. Rogus stated
that persons from NHLBI and other institutes will be engaged to find out their
experiences in this area. It may be possible to incorporate sleep content into
models already in place. A Board member noted that other Institutes are
interested in this topic and suggested that plans be made before next fall so
that funding can be obtained for next fiscal year.
Dr. Millman recapped the various topics suggested for
a future publication:
- Medications and their impact on sleep
- Sleep disorders in children
- A physicians booklet on narcolepsy
General discussion about these topics followed. The
following comments were offered:
- We now know a lot about narcolepsyit seems
that it would be a do-able project. On the other hand, a project on
drugs and sleep would require much more in terms of processit is a much
- The Narcolepsy Network is willing to raise funds to
support a narcolepsy project.
- The project on sleep disorders in children would
address not only sleep apnea but also sleep needs in children and adolescents.
It would take a broad approach to the topic.
- For a pediatric project, we would need to work in
partnership with the American Academy of Pediatrics to get the most
- It seems that a narcolepsy project would be faster
and shorter term. A project on sleep disorders in children is longer term, with
more impact. There would likely be several products needed to support such a
- Decisions about priorities need to take into
account the science base for the topic, the size of the target audience, and
the potential impact on society.
- Dr. White recapped that the next product to be
developed would be similar to those already produced by the NCSDR on sleep
apnea, insomnia, problem sleepiness, and RLS. It will be a product for
physicians and health care professionals rather than patients.
- The narcolepsy project may be able to be completed
in a relatively short time frame, allowing planning for a more comprehensive
project to take place at the same time.
- A product dealing with children would be the first
time this group has dealt with that target audience in this way and would
- The pediatric publication would have to be narrowed
to some extent, for example, kindergarten through grade 12 and all the stages
in between is a very broad range.
- There was agreement that we now have science on
narcolepsy, but there will be a lot more known about pediatric issues in the
next year or so.
- A document on children and sleep disorders could
include information about narcolepsy without negating the need for a future
document on narcolepsy.
- Narcolepsy is a very important topic, but the
condition is rare. It is mentioned in the problem sleepiness document. Most
primary care physicians would not see narcolepsy as something they will
- Two areas could be addressed with one document if
the piece on children included enough information about narcolepsy. There was
general agreement with this concept.
- Ms. Rogus asked for clarification about what topics
would be considered for the childrens document. Dr. White stated that for
children (K through 12), causes of sleepiness would be the primary issue
- A caveat needs to be included that says sleepiness
manifests differently at different ages.
- Should this document focus only on recognition and
not deal with treatment? We may be taking on too much if we address
- There was agreement that any document needs to be
Dr. White asked Board members for a show of hands to
indicate support for or opposition to a proposal to produce a document on sleep
in children that will focus primarily on sleepiness and include information
about narcolepsy. The recommendation was passed for consideration by NHLBI.
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VII. NINDS CURRENT
PLANS AND EFFORTS IN SLEEP RESERCH - Dr. Gerald Fischbach
Dr. Fischbach described the neurodegenerative
disorders researched at NINDS which may have important implications for the
mechanisms underlying sleep and REM behavioral disorders. In fiscal year 1999,
the NINDS sleep related grant portfolio exceeded $15 million.
Dr. Fischbach characterized sleep as an under-studied
area, but vital to everyones health. The NINDS wants to be more actively
involved in sleep research. Sleep disorders may be an early predictor of
Parkinsons disease, and vice versa. Researchers have had their attention
directed to very specific circuits of the brain that may lead to periodic limb
movement disorders during sleep and perhaps preceding sleep. Sleep has risen to
the level of a major concern in neurological and psychiatric disorders of all
kinds, and research on these disorders will shed light on normal
neurobiological mechanisms underlying sleep.
Dr. Fischbach noted that a new mode of therapy for
Parkinsons disease has been discovered which includes activating a
specific brain region (subthalamic nucleus). He predicted that more frequently
therapy will be based on altering the electrophysiological activity of the
brain, including therapy for debilitating sleep disorders.
In response to an RFA for Deep Brain Stimulation for
Parkinson Disease and Other Neurological Disorders, seventy letters of intent
and forty complete applications were received by NINDS . These projects will
focus on the brain including the role of these pathways in sleep and sleep
A discussion of sleep as a neurologic state followed
Dr. Fischbachs presentation. Some clinicians feel that sleep disorders
may be an early marker of Parkinsons disease. There is a common element
in degenerative disorders such as Parkinsons and Alzheimers; sleep
disorders may be central to both of them.
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Sleep Recording in Rodents [Dr. Emmanuel
Dr. Mignot reviewed potential available sleep
recording systems that could be used by those who want to move into studying
animal sleep. Currently six or seven systems are in use, including several that
are commercially available.
The Board discussed the issues raised by not having a
standard for sleep studies in rodents. In recognition of this problem, NINDS
issued a contract solicitation last year and an electrophysiological system for
rodents is being developed. The need for standardization is illustrated by the
difficulty in reviewing data from other labs. The solution may eventually be
market driven (i.e., let researchers pick the system they want). The Advisory
Board has previously raised this issue and brought together national experts to
address the problem. That working group was unable to develop a common
solution. The Board decided that listing the current rodent recording systems
on the Sleep Research Society/American Academy of Sleep Medicine websites would
help facilitate sleep research in rodents.
Enhancing Research on Sleep Deprivation Effects
[Dr. Fred Turek]
Dr. Turek led the discussion on Enhancing
Research on Sleep Deprivation Effects with the question, What are
the health consequences of chronic sleep loss over long periods of time on the
various physiological systems? The discussion centered on how to take
advantage of existing clinical trials and epidemiological studies to
incorporate sleep related questions without over burdening the patient
population. Specific challenges would include researchers with different
agendas and ideas choosing their populations; the new challenge of linking
basic science to clinical issues; how to get large centers together to discuss
the studies already ongoing; how to facilitate the link between epidemiologic
studies, clinical trials, and genetics. The challenge left with the Board is
how a consortium might be structured to take advantage of clinical data,
epidemiological studies, and the molecular genetic revolution, perhaps through
high-powered bioinformatics interactions. A centralized bioinformatics
organization to handle communication of data as it relates to sleep would be
needed. A step-wise progression of bringing together epidemiological, clinical
and basic researchers to stimulate the different types of science was
For example, some of the National Institute on Aging
(NIA) longitudinal studies could be primed to introduce sleep into them. A
multi-institute supplement program was suggested to allow researchers to get
additional polysomnography data. A mechanism that allows for being
opportunistic, such as a program announcement, was suggested.
Another challenge will be to get basic molecular
advances to influence the clinical and epidemiological questions. A bridge
between the genetic level and more clinical level, such as the behavioral
neurosciences, to link the operations of genes and gene systems to larger
phenomenon, was suggested. The discussion concluded with the decision to take
this important issue to discussion by the Trans-NIH Sleep Research Coordinating
Phenotyping Human Sleep - [Dr. Emmanuel Mignot]
Understanding human sleep and sleep processes through
genetic mechanisms was incorporated into the Genomic Applications for Heart,
Lung, and Blood Research RFA. The best way to stimulate research in the area
would be to use genetic information in epidemiological cohorts or other genetic
studies. The idea would again be to add sleep to ongoing general population
based studies. Discussion included the problem of different etiologies for the
Insomnia Workshop [Drs. David White, Robert
Greene, Daniel Buysse, Mary Carskadon]
The neurobiological basis of insomnia presents an
understudied but important area. Recent advances suggest that a workshop is
needed to assess current understanding and identify research directions.
Clinical as well as basic neuroscience approaches can be taken to the questions
raised by insomnia. A basic neuroscience approach would involve some of the new
transgenic and gene expression methods as well as newer electrophysiological
findings involving new technology and in vitro approaches.
The AASM noted that this is a priority area for their
organization that has lagged behind other areas in sleep disorders research.
All the development, affective, and cognitive neurosciences can be brought to
bear in the study of insomnia. Insomnia treatments would be stimulated by
understanding the neurobiology of the condition better. The workshop mechanism
is one that will bring together the scientists who will guide further research
focused on this clinical problem from the basic perspective.
Potential topics for workshop discussion included the
physiological transition from wake to sleep in a normal animal; how sleep is
initiated and maintained in a normal animal; and the neurological mechanisms
underlying disorders associated with insomnia such as stress or depression.
Future directions - [Dr. David White]
Initiative: Sleep Disorders in Children. Very little
is understood in terms of the pathophysiology and consequences of sleep
disorders in children. A growing number of people are involved in this research
clinically and scientifically. A number of opportunities exist to examine how
sleep loss affects behavior and development of children. The Board spoke about
the importance of this area and whether the clinical and scientific framework
exists in pediatric sleep issues. Data are not available on what sleep is like
in children from ages 3 - 10. Developmental growth at that age is a research
opportunity. Bringing in other fields, including epidemiological, mental health
and non-sleep related expertise would assist in looking at the issues of how
sleep provides the scaffolding for behavior and brain development. Data from
animal studies are missing in this field.
Initiative: Biomarkers of the Interrelationships
Between Sleep and Other Disease Processes. Several questions are crucial to the
area of sleep biomarkers: what is the interrelationship between sleep and other
disease processes; can sleep be used as a marker in other disease processes; is
sleep affecting other diseases and do other diseases affect sleep. This concept
embraces the Advisory Board discussions over several years regarding advancing
understanding of how sleep deprivation affects general health, and efforts to
provide the measurements of how sleep affects disease. Currently it is very
difficult to study some of the adverse affects of sleep apnea clinically with
the available technology tools. A sleep biomarkers initiative would provide a
framework for basic research as well as for potential clinical application,
such as inflamation.
This concept is distinct from the National Institute
of Nursing Research PA-00-046, Biobehavioral Research for Effective Sleep,
which was specifically not for sleep disorders. This concept would be specific
to the disease.
Discussion included the personal statement by Board
member Carol Walker of the relationship between physical deterioration and
sleep disorders; the neurological connection between disease states and how
sleep is impacted; the linkage to psychiatric disorders with sleep as a marker
and consequence of these disorders. The programmatic challenge is to find
avenues and ways linking specific known systems to known circuitry and systems
associated with sleep onset and sleep maintenance in a mechanistic way, and to
look at causal connections between various disease states and various aspects
of sleep. Determining how sleep deprivation affects physiology is a key issue
and should be pursued.
National Research Service Award T32-Program
Announcement (PA) -Dr. Michael Twery
Dr. Twery noted that the T32 PA funded 4 grants.
Continued support for this mechanism was recommended by the Board.
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Related Activities In The Department Of Transportation (DoT) - Human Factors
Program - Dr. Tom Raslear
Dr. Raslear provided an overview of fatigue research
at the DoT including a new initiative on fatigue management. The DoT does
research focused on safety rather than biomedical issues with a strong interest
in making operators safer and meeting the regulatory needs of government and
At DoT, fatigue research includes the working
environment, temperature, vibration, noise, sanitation, workload, information
flow; and organizational climate. This fiscal year the Human Factors
Coordinating Committee has produced a plan for operator fatigue management
policy that will be funded by the various DoT components. This initiative is
designed to develop a knowledge base to formulate strategies, tools, and
technologies to forecast, detect, and pro-actively manage fatigue.
Phase 1 of this initiative will involve compiling a
fatigue management resource on the best practices of fatigue management,
including a consensus of experts, technology developers, and an initial
assessment of promising approaches as determined by performance markers. A
broad agency announcement will go out at the same time; its purpose is to
foster partnerships and promote technology development including performance
Phase 2 will run for four or more years, resulting in
the second edition of the fatigue management resource and progress on a fatigue
management analytical system.
Human factor representatives from each of the DoT
modes will be available to speak about their programs at future Board meetings.
Discussion followed regarding engaging the sleep
community and sleep researchers in DoTs efforts. The Board will continue
to follow DoTs plan for operator fatigue management policy. The funds for
this project will come from the Office of the Secretary of Transportation and
each DoT component. Evaluation of the fatigue management plan will be part of
the DoT initiative.
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X. NEW BUSINESS - All
Board members expressed concern regarding potential
decreases in the Department of Defense (DoD) commitment to sleep-related
research. Board members requested that a DoD representative attend the next
meeting to discuss an overview of DoD sleep related research.
In his closing comments, Dr. Twery reminded the Board
that the NCSDR welcomes suggestions for potential candidates to replace
retiring Board members.
The meeting was adjourned at 4:40p.m.
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XI. FUTURE SLEEP DISORDERS RESEARCH ADVISORY BOARD
Wednesday, December 6
Tuesday, June 26
January 2002 (Date To Be Announced)
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We certify that, to the best of our knowledge, the
foregoing minutes are accurate and complete.
Sleep Disorders Research
Michael Twery, Ph.D.
Acting Exective Secretary
Sleep Disorders Research Advisory Board
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