Narcolepsy Research

Reviewed by: HU Medical Review Board | Last reviewed: June 2020

Medical breakthroughs come from research into all kinds of diseases and illnesses, including narcolepsy. Different types of research include laboratory studies, clinical trials with patients, genetic studies, and much more.

Scientists may focus their research on how to treat narcolepsy, its effects on the emotions or social life, and more. Research may take years before it changes how narcolepsy is treated, but new research goes on all the time. Gradually, the treatment of narcolepsy improves thanks to research and the volunteers who join clinical trials.

Clinical trials for narcolepsy

Clinical trials are an important part of medical research. A clinical trial tests new drugs, surgeries, or devices that help prevent, diagnose, or treat a disease. You can volunteer for a clinical trial if you meet certain conditions.

These conditions vary with each clinical trial but may include age, willingness to use a new device or drug, ability to go to regular doctor appointments, or the presence of other health conditions. You will be carefully followed during the trial, and you can stop your participation at any time.

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The U.S. Food and Drug Administration (FDA) approves and oversees all clinical trials conducted in the U.S. In addition, hospitals tied to universities manage clinical trials through institutional review boards (IRBs). IRBs review the way a study is designed and any supporting research to protect patients. For a doctor or company to hold a clinical trial, it must be approved by one or both of these groups.

Often, any medical care related to the trial is provided to the patient at no cost because it is experimental.

Dozens of clinical trials are underway to improve our understanding of narcolepsy and its treatment. Some areas of current research include:1-2

  • How well new drugs work to treat narcolepsy
  • The use of telemedicine in follow-up care
  • Long-term effects of narcolepsy and its treatments on lifestyle and health
  • Metabolism and behavior issues in children with narcolepsy
  • Body weight changes in people with narcolepsy
  • Mindfulness practice and its role in improving quality of life
  • Transportation options for people with narcolepsy

Phases of clinical trials

Clinical trials come in 4 stages. Each stage, or phase, is designed to test the safety and usefulness of the new drug, device, or treatment protocol. Here are the general stages of a clinical trial:3

  • The pretrial phase is conducted on animals other than humans. This is done to decide if the drug or device is safe enough to test in humans.
  • Phase 1 lasts 1 month, and includes roughly 20 to 80 people.
  • Phase 2 lasts 3-12 months and includes a few hundred people.
  • Phase 3 lasts 6-12 months and includes thousands of people.
  • If found safe, the drug or device company files for FDA approval. Approval usually takes 6-12 months.
  • Phase 4 begins after a drug has been released onto the market. The agency watches for serious and long-term side effects that were not found during early testing.

A clinical trial may be shut down at any stage if the doctors find that the new treatment harms people or has no effect.

Where to learn more about narcolepsy research

If you are interested in learning more about clinical trials, ask your doctor if one might be right for you. You can also learn more about narcolepsy through several websites, including:

Talk to your doctor about what you find online since sometimes it is not always easy to understand all the medical jargon. Your doctor may also be able to explain why you may or may not be a good fit for a study and whether there is other research that applies to you better.