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Using technology to better understand life with narcolepsy

The following story is part of an ongoing series celebrating Rare Disease Day 2022. For more information, click here.

We are excited to highlight our partnership with TREND Community to advance their shared commitment to fighting for rare disease patient communities and bringing treatments to patients faster.

TREND narcolepsy story

Takeda and startup TREND Community were introduced through the MassChallenge HealthTech program in 2021. With a shared goal of bringing treatments to patients faster,  we’re currently focused on using groundbreaking technologies to better understand narcolepsy and the people who it impacts. There are significant misconceptions about people with narcolepsy, which can lead to a lack of urgency when it comes to diagnosis, care and support.

Is narcolepsy a rare disease?

Narcolepsy is a rare, acquired, chronic neurological sleep disorder characterized by excessive attacks of drowsiness during the day and disruptions to the sleep-wake cycle.

There are two types of narcolepsy (types 1 and 2), with type 1 being the most common.1 Episodes may persist for a few seconds or several minutes, and can happen every so often or every day. Only .03% to .16% of the global population suffers from narcolepsy; however, it is regularly unrecognized and/or undiagnosed.2

How is narcolepsy diagnosed?

Narcolepsy is diagnosed based on clinical evaluation, patient and family history, review of symptoms, and specialized sleep studies.2 Symptoms of narcolepsy can often mimic conditions including depression, insomnia and sleep apnea. According to a recent study, 60% of narcolepsy patients may be initially misdiagnosed.3

What are the misconceptions around narcolepsy?

There are many facts about narcolepsy that people may not know, some being:

  • Symptoms of narcolepsy have been reported in children as young as five or six years old; however, it is often not diagnosed until an older age.4
  • People with narcolepsy often enter REM (rapid-eye-movement) sleep and dream during naps. People without the condition do not enter REM sleep or dream during brief sleeping periods.5
  • While those without narcolepsy generally sleep well and without waking up, people with narcolepsy can suddenly awaken in the middle of sleep. 5
  • Overwhelming sleepiness or "sleep attacks" can come on quickly for patients with narcolepsy. In between sleep attacks, people with narcolepsy are alert and awake, especially when doing activities that hold their attention.6
  • Many people carry the gene for narcolepsy. In fact, one-quarter of the general U.S. population carries the genetic marker for narcolepsy, but only one in 500 people will develop the condition.3

What will our partnership with TREND do to support narcolepsy patients?

As a result of our partnership with TREND, we’ve launched a technology-based initiative with the narcolepsy community (co-sponsored with Harmony Biosciences). By using TREND’s artificial intelligence engine, real-world social media conversation data from narcolepsy patients are analyzed to explore how real-life stories and shared experiences have the potential to enhance understanding of the disease’s impact on daily life and reveal current unmet needs of the patient community. For more information on this initiative and our additional collaborators, click here.

How will this partnership benefit narcolepsy patients?

One of the best ways to improve the lives of people living with rare diseases like narcolepsy is to hear directly from them on what they need and want. By tapping into patient and caregiver conversations, treatment providers can strengthen their understanding of patient experiences and rare diseases themselves, enabling better informed care guidance and more targeted treatment plans to patients.

What will Takeda and TREND do with this patient data?

We look forward to presenting data collected at the upcoming World Sleep Congress. The findings will shed light on the day-to-day experiences of people with narcolepsy, including what may trigger narcolepsy episodes, the mental health impact of the condition, diseases that may coexist with narcolepsy, and how patients communicate about their disease. We will use this data to enhance our understanding of the disease while advancing treatment development and patient support efforts worldwide, with the goal of enhancing quality of life for those living with the challenging condition.

Read more of our Rare Disease Day 2022 stories here.


References

  1. Mount Sinai. https://www.mountsinai.org/health-library/report/narcolepsy Accessed January 12, 2022.
  2. National Organization for Rare Disorders https://rarediseases.org/rare-diseases/narcolepsy/. Accessed on December 8, 2021.
  3. Narcolepsy Fast Facts. Narcolepsy Network. https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts/. Accessed January 12, 2022.
  4. Narcolepsy in Children. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/14307-narcolepsy-in-children. Accessed December 9, 2021.
  5. Understanding Narcolepsy. Healthy Sleep. https://healthysleep.med.harvard.edu/narcolepsy/what-is-narcolepsy/understanding. Accessed January 12, 2022.
  6. Narcolepsy Fact Sheet. National Institute of Neurological Disorders and Stroke, NIH. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. Accessed January 12, 2022.