Every advance in the understanding of narcolepsy is based on research. Wake Up Narcolepsy, Inc. (WUN) is committed to advancing research and encourages people with narcolepsy and their families to learn about opportunities to participate in research studies and clinical trials.
Harvard Medical School:
- Currently recruiting persons with narcolepsy and cataplexy for a skin biopsy/stem cell study. Skin biopsies from people with narcolepsy will be used to make stem cell lines (cells grown in dishes that keep growing in the laboratory). The researchers will take a skin biopsy from the leg and then induce these cells to become stem cells. These stem cells can then be developed into more specialized cells, such as brain cells making hypocretin and other signaling molecules. The researchers can test the cells to find out why they die, and also how to keep them alive and healthy. Understanding the vulnerabilities of hypocretin cells made from people with narcolepsy might one day offer hope of a way to prevent or cure narcolepsy. Contact Dr. Andrew Wellman (email@example.com) or Florian Merckle (firstname.lastname@example.org)
Stanford Center for Narcolepsy:
- Currently recruiting African Americans with narcolepsy for Blood Study. Patients may or may not have cataplexy. Participants will be asked to complete a questionnaire, provide copies of their sleep-related medical records and arrange locally for a blood sample to be sent to the Center for Narcolepsy via prepaid FedEx for HLA typing. Please call for more information:650-721-7550
- Currently recruiting persons with narcolepsy for genetic studies and hypocretin measurement studies. Contact Mali Einen, Clinical Research Coordinator, at 650-721-7550.
- Currently recruiting persons with narcolepsy with recent onset (within the last year or two) for a throat swab collection. The throat swabs will test for strep titers and other bacterium that may be present. Contact Mali Einen, Clinical Research Coordinator, at 650-721-7550.
- Currently recruiting persons with narcolepsy to fill out the Stanford Sleep Inventory Questionnaire. Completed surveys can be returned to Stanford Center for Narcolepsy. Please call Mali Einen, Clinical Research Coordinator, with any questions at 650-721-7550.
ClinicalTrials.org – is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. Visit: www.clinicaltrials.org and search “narcolepsy.”
Brain Donation Programs: To better understand the cause, course, and treatment of narcolepsy, leading narcolepsy research institutions have established brain donation programs. Donated brains provide an invaluable resource to the future of the narcolepsy community.
Harvard Medical School’s Brain Donation Program: Dr. Thomas Scammell’s lab is currently accepting brain donations and especially in need of brains from people with well-documented narcolepsy without cataplexy, as much less is understood about this disorder. For more information, contact Dr. Thomas Scammell at email@example.com.
Additional Research Resources: For more information about clinical trials related to narcolepsy, talk with your doctor. You also can visit the following Web sites to learn more about research opportunities:
- National Institutes of Health, clinicalresearch.nih.gov
- U.S. National Institutes of Health, www.clinicaltrials.gov
- National Heart, Lung and Blood Institute, www.nhlbi.nih.gov/studies/index.htm
- ResearchMatch, www.researchmatch.org
- Havard Medical School Sleep Research Recruitment, sleep.med.harvard.edu/research/recruitment
- Aerial BioPharma, LLC, clinicaltrials.gov/ct2/show/NCT01681121
- NeuroTrials Research, Inc., www.neurotrials.com
For more information about clinical trials for children, visit the NHLBI’s Children and Clinical Studies website.