PatientCrossroads recently launched the NEXUS Narcolepsy Registry, which is designed to describe the course of disease and treatment over time as well as to quantify the impact of narcolepsy 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, 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,” says Michael J. Thorpy, MD, professor of clinical neurology at Albert Einstein College of Medicine, in a release. Thorpy is also 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.

In its first two months,the NEXUS registry registered more than 500 participants.

“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,” says 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.

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,” says Mark Patterson, MD, PhD, 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,” says Monica Gow, executive director and co-founder of Wake Up Narcolepsy.

Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients.