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NN presents two posters at SLEEP 2014 meeting

Narcolepsy Network (NN) made two poster presentations at the SLEEP 2014 meeting in Minneapolis.  Both posters were authored by Mark Patterson, MD, PhD, co-vice president of  NN’s Board of Trustees.  The SLEEP meeting is a joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society.  Approximately 5,000 sleep professionals from around the world attended the meeting, held May 31 – June 4, 2014. FDA Poster

One poster presentation, “Narcolepsy Community’s Response to the FDA Patient-Focused Drug Development Initiative” provided an overview of the FDA’s public meeting on narcolepsy drug development, held on September 24, 2013, and Narcolepsy Network’s role in generating interest and participation in the meeting.  Nearly 900 people took part in the meeting, either in-person on via an online webcast.  Many more watched online video of the meeting afterwards.

The poster concludes that, “The overwhelming response of the narcolepsy community to the FDA’s request shows the efficacy of the use of email and social media in enhancing participation by those with chronic conditions in policy discussions on a national level.” QR Code poster

The other poster, “Scannable QR Coded Medical Alert Wristbands for Patients with Narcolepsy,” focused on Narcolepsy Network’s development of a medical alert wristband and corresponding informational web page.  The wristbands feature a QR code, which when scanned with a smartphone, takes the user to a pre-determined web page.

NN often hears from people with narcolepsy that they have received suboptimal medical care in emergency departments, apparently because medical personnel do not have a good understanding of narcolepsy and the medications used to treat it.  In an effort to find a fast and easy way for first responders and medical staff to get relevant information about narcolepsy, and to help ensure that people with narcolepsy receive effective emergency care, Dr. Patterson led NN’s effort to develop the wristbands. The bands were distributed to all NN members in early 2014, and follow-up survey will be conducted over the summer to evaluate how well the wristbands have worked.  Results of the survey will be presented at NN’s annual conference in Denver.

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Date Created: June 18th, 2014
Last Updated: June 18th, 2014