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Narcolepsy Network Responds to NIH’s Call for Comments on Revision of Sleep Disorders Research Plan

Advocating on behalf of all people with narcolepsy, and in keeping with our mission to promote scientific research and early diagnosis, Narcolepsy Network submitted the following comments to the National Institutes of Health (NIH) in response to their  June 9, 2010 notice, NOT-HL-11-107:  Request for Information (RFI): Sleep Disorders Research Plan.

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To:  National Institutes of Health

Narcolepsy Network is the only non-profit organization in the U.S. that provides patient support to persons with narcolepsy, idiopathic hypersomnia and other hypersomnias. We are a membership organization whose membership has grown in the past 10 years from several hundred to over 1300. Our services are provided to members and non-members alike.

During the course of one year, we field hundreds of phone calls, close to 1000 email inquiries and personally interact closely with approx. 200 people who attend our annual Conference. We have an active online forum; among our Trustees and members active on our Board Committees we have 4 individuals who have been hosting narcolepsy chats for 10 years and several individuals who lead active support groups. All of these venues uniquely position us to understand and speak on behalf of the needs of narcolepsy patients.

Narcolepsy with cataplexy is a life long neurological condition affecting one out of about every 2,000 Americans.  Similar conditions like narcolepsy without cataplexy, idiopathic hypersomnia and other hypersomnias add an unknown number of our citizens to this group.  This makes this set of disorders among the most common neurological conditions.  The toll on the national economy, health system and society can not be estimated.

There are many gaps in current knowledge about narcolepsy, related sleep disorders and circadian rhythm disruption.  Being an organization composed primarily of people who live with these conditions we can not be expected to have full insight into the many intricacies involved in research.  We do know that the following basic issues are in desperate need for attention:

1.  Narcolepsy and other hypersomnias are orphan diseases not only because of their low level of incidence but also in that it has been difficult to attract both public and private funding for basic research.

2.  Important advances in the study of narcolepsy with cataplexy have been made in the past several years.  This momentum needs to be continued until a full understanding of the cause(s), mechanism(s), diagnosis, prevention and effective treatments or cures are realized and made available to all.

3.  There have been essentially no advances in the understanding of narcolepsy without cataplexy, and other hypersomnias.  Research into these conditions needs to commence immediately and continue until effective diagnosis, prevention, treatments or cures are made available to all.

4.  The existing diagnostic tools and the definitions of the various types of narcolepsy and other hypersomnias are inadequate.  There is frequent misdiagnosis including both false positives and false negatives.  This is because there is poor understanding of these conditions among clinicians; genetic testing lacks full understanding of all of the factors involved; differential diagnosis relies on anecdotal evidence, subjective observation by the under-trained, under-experienced, under-informed and misinformed diagnostician; the poor patient preparation and “First Night” effect in sleep disorder testing; the unavailability, invasiveness and hazards of CSF hypocretin testing.

5.  On average, medical students are exposed to less than two hour of instruction on sleep and sleep disorders in a four year curriculum.  It is not known how much instruction Physician’s Assistants, Registered Nurses and other health care professionals receive on these subjects.  It is essential that research be conducted on the quantity and quality of education and the qualifications needed to address this large gap in learning.  Goals, objectives and timetables need to be set and enforced not only for initial education but continuing education as well.

6.  As many of these disorders become manifest in children of school age, complimentary studies, standards and programs should also be undertaken for educators and ancillary school staff.  The role of sleep in health and mental well being and latest information and discoveries about sleep should be integrated into elementary and secondary education programs.  In addition, because of the great impact of inadequate sleep and sleep disorders on learning and development, sleep assessments must be mandated as a part of annual school physical exams.

7.  There is a lack of appropriately trained and experienced sleep researchers. It is essential to promote and develop the proper educational resources to improve the number and abilities of researchers in studies about sleep and sleep disorders.

8.  Develop and disseminate comprehensive standards for the identification of people at risk for all forms of narcolepsy and other hypersomnias as well as diagnostic criteria, and care and treatment plans.  Special consideration must be given to include the hereditary legacy of the individual as genetic predisposition is believed to vary with geographic origin, ethnicity, race and currently unidentified environmental factors.

9. Develop new medications for the treatment of narcolepsy and other hypersomnias and methods of administering them so that treatment is targeted at treating the disorder rather than relief of symptoms.  Ways must also be found to assure that these treatments are available to all who need them and not just those who are economically secure.

10. To assure that every person has the opportunity to find self fulfillment as a contributing member of society, appropriate federal agencies should research, develop and distribute material for employers, employees and labor groups about the benefits of employing and retaining people who have different types of disabilities. This should include identifying them and their special talents and abilities, hiring, discovering appropriate accommodations and maintaining them as a valuable asset.

Narcolepsy Network would be happy to elaborate on any or all of the above items and look forward to   participating in the Sleep Disorders Research Advisory Board meeting in August.

I, the members of the Board of Trustees, Staff Members and the members of Narcolepsy Network thank the NIH and all other agencies involved in this project for the opportunity to comment, contribute and participate in this process.

All of us look forward to the reports these efforts generate, the final plan and continuing our relationship with all of the contributing groups.

Most sincerely,

Patricia Duffin Higgins, RN
President, Board of Trustees
Narcolepsy Network, Inc.

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Date Created: July 3rd, 2010
Last Updated: August 18th, 2010