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Research Study for Adults with Narcolepsy – Share Your Story

May 14th, 2019

People with narcolepsy face challenges and problems every day – symptoms and problems are not always recognized or understood by health care providers or members of the public. By sharing your experiences, you will help researchers to educate health care providers and others about the realities of living with narcolepsy. This is an opportunity to share your story and change the way others see this disorder.

You are eligible to participate in this research if you are at least 18 years old and have been diagnosed with narcolepsy. Participating involves taking an anonymous online survey about your experiences living with narcolepsy. No names or identifying information will be collected.

The survey takes about 30 minutes to complete. You will be asked about your experiences and perceptions of dealing with narcolepsy. There will also be questions about your age, gender, marital status, symptoms, and medications. Narcolepsy Network will e-mail a survey link and consent information to members. The survey link is posted below and on the NN Facebook page. The researchers will not have access to your e-mail address or membership information.

The survey is being conducted by faculty (Mark Parshall, PhD, RN and Jennifer Averill, PhD, RN) at the University of New Mexico and Teresa Sellstrom, PhD student.  If you have any questions about this research project, please feel free to call Ms. Teresa Sellstrom at 423-534-0075 or Dr. Parshall at 505-272-8248.

To go to the survey, click here or, if you prefer, you can type this URL into your internet browser: http://j.mp/2DG7CD5

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Date Created: May 14th, 2019
Last Updated: May 13th, 2019

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