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Research

Great strides have been made in recent years in understanding the cause(s) of narcolepsy, but much work remains to be done. Your participation in research studies will help researchers to unravel the mysteries that remain.

Research projects currently seeking participants:

Participants Needed for Advisory Board
A narcolepsy advisory board will be hosted by Takeda Pharmaceuticals on Sunday, January 20, 2019 in Los Angeles, CA. The meeting will last approximately 5 hours. Takeda would like to learn more about how the excessive daytime sleepiness in those with narcolepsy type 1 affects the ability to pay attention, to concentrate, and to function.

Takeda Pharmaceuticals is seeking six to eight individuals with narcolepsy type 1 between the ages of 18 and 65 to participate. Participants will receive fair market compensation for their time and reasonable and customary travel expenses will be considered for reimbursement on a case-by-case basis.

Takeda Pharmaceutical Company Limited is a global, research, and development-driven pharmaceutical company committed to bringing better health and a brighter future to patients by translating science into life-changing medicines. Takeda focuses its R&D efforts on oncology, gastroenterology, and neuroscience therapeutic areas plus vaccines. Their global headquarters for Research and Development is in Cambridge, MA.

For those who are interested in participating, please contact Jessica Cerullo Merrill at jcerullo@vozadvisors.com by Wednesday, December 5, 2018 to arrange for an initial phone screen to inform the selection of participants.

Research Survey for Parents of Children with Narcolepsy or Other Sleep Problems
Has your child been diagnosed with narcolepsy? Or, have you taken your child to the doctor where the main reason for the visit was to address the child’s sleepiness?
If so, you are invited to take a survey to help pediatricians detect narcolepsy in children. The survey will take about 30 minutes to complete. You will receive a payment of $25 for completing the survey.

By participating, you may help pediatricians identify the symptoms of narcolepsy in children and make the correct referrals to sleep specialists. For more information, please email contact.na@proclinica.info or call 1-866-658-9749 (see this flyer for full details). Your participation in this survey is voluntary. It will not affect your child’s current treatment.
Your answers will be kept confidential, and will not be shared with your doctor. Your personal information will be protected. Your name will not be included on any reports or publications.

Mapi, an Icon Plc., a research company is conducting the Pediatric Narcolepsy Screening Questionnaire on behalf of the study sponsor.

Taken Xyrem in the Last Two Years? You Can Participate in This Study!
Have you taken Xyrem within the past two years? Harvard Medical School and Brigham and Women’s Hospital is currently conducting interviews to determine how FDA-mandated safety programs impact the prescribing and use of drugs like Xyrem.

Little is known about the impact of such programs on physicians, patients, and manufacturers, including whether they increase prescribing burdens, reduce patient access, enhance costs, or improve patients’ experiences with their illnesses. This study will seek to answer these questions. Participation will involve a 60-minute interview. Upon successful conclusion of the interview, study participants will receive a $50 Amazon gift card.

If you have received Xyrem within the past two years, you may be eligible. For more information, please contact the study principal investigator, Dr. Ameet Sarpatwari at asarpatwari@partners.org.

Research Study is Enrolling to Evaluate Medications for Excessive Daytime Sleepiness
A voluntary research study is enrolling to evaluate medications for individuals diagnosed with Sleep Apnea or Narcolepsy. Participants must experience excessive daytime sleepiness to qualify. Five site visits will be required, weekend visits can be arranged. Qualified participants will receive up to $1700 for time and travel.

Visit www.prnsd.com or call us at 619-294-4302 to find out more and to see if you qualify.

Nexus Narcolepsy Registry
The Nexus Narcolepsy Registry is a collaboration of patient advocacy organizations including NN, leading narcolepsy researchers, and industry. Its goal is to track a large number of people with narcolepsy (PWNs) over several years. PWNs who volunteer to participate will complete a series of questionnaires about themselves at regular intervals. Anonymous data from the surveys will help researchers learn more about the experiences of PWNs, how narcolepsy affects their lives, and how the condition changes over time. Find more information and participate in this important research program by visiting the registry website.

For more information on current clinical trials visit the National Institutes of Health’s clinical trials website.

 

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