PatientCrossroads Launches First Online Narcolepsy Patient Registry

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NEXUS patient-centered narcolepsy registry is the result of collaboration by academic, pharmaceutical and advocacy leaders

PatientCrossroads announces the launch of its NEXUS Narcolepsy Registry, designed to describe the course of disease and treatment over time as well as to quantify the impact of this rare, chronic, debilitating neurological disorder on patients’ quality of life, daily functioning, productivity and healthcare resource utilization. A collaborative effort by the narcolepsy research and broader medical and pharmaceutical industries, the registry intends to track large numbers of people with narcolepsy over several years. It will publish its findings at medical meetings, with the goal of stimulating new research to aid the diagnosis and treatment of narcolepsy.

“We know that narcolepsy is caused by the brain’s inability to regulate sleep-wake cycles normally, but we lack sufficient information about the details of the neurological disorder to understand how to provide effective treatment for all narcolepsy patients. The NEXUS registry holds great promise to help us answer fundamental questions,” said Michael J. Thorpy, MD, professor of clinical neurology at Albert Einstein College of Medicine; director of the Sleep-Wake Disorders Center in the Department of Neurology at Montefiore Medical Center in New York; president of the New York State Society of Sleep Medicine; and recipient of both the Nathaniel Kleitman Award from the American Academy of Sleep Medicine and Lifetime Achievement Award from the National Sleep Foundation.

Within the first two months the NEXUS registry was open, it had more than 500 participants. Narcolepsy patients interested in joining NEXUS can visit

“The NEXUS project is an ideal application of a patient-centric registry, able to shed light on a rare disorder that has had little in-depth research to date,” said Kyle Brown, founder of PatientCrossroads. “Patients are in control of enrolling in the registry and sharing information about their own symptoms, treatments and experiences of living with narcolepsy. As a result, they can be powerful agents in research that could benefit themselves as well as the entire population of those with narcolepsy—while at the same time protecting their privacy.”

Any US adult aged 18 and over who has been diagnosed by a medical doctor as having narcolepsy can join the NEXUS registry. After registering for NEXUS, patients are invited to complete a questionnaire describing their own narcolepsy experience, diagnosis, symptoms and treatment. Patients are asked to complete follow-up questionnaires every six months.

NEXUS Registry a Collaboration of Experts
The NEXUS registry’s comprehensive web-based patient-reported survey was designed by a steering committee that includes those with clinical and research expertise in narcolepsy, experts in observational research and statistics, and patient advocacy and pharmaceutical industry representation. The registry is sponsored by Jazz Pharmaceuticals.

“I first became interested in narcolepsy and cataplexy when my daughter was diagnosed with these conditions in 2004. As a clinical pediatrician, former biotechnology researcher and parent of an affected patient, I am looking forward to the new levels of information that we expect to emerge from the NEXUS registry,” said Mark Patterson, MD, Ph.D., a physician with Carilion Clinic in Roanoke, Va., and a board member of the national non-profit Narcolepsy Network.

“The NEXUS registry has the potential to greatly accelerate what is known about this still rather mysterious disorder, by pooling information about the experiences of as many patients as possible. I hope that everyone who has narcolepsy will join the NEXUS registry so we can make real progress for patients everywhere,” said Monica Gow, executive director and co-founder of Wake Up Narcolepsy.

About PatientCrossroads
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple disease areas to be shared and used to research diseases, find new treatments, and better educate and support patients and their families.

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Kyle Brown
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