Through fundraising events, grant distribution and engagement with the patient community, WUN acts as both a facilitator and an anchor bringing life, stability and encouragement to people affected by Narcolepsy.
Until the late 1990’s, narcolepsy was a complete mystery. Doctors suspected that the problem lay within the hypothalamus, a part of the brain that regulates arousal, sleep, hunger and other functions, but the specific problem was unknown. The discovery that narcolepsy is caused by a loss of the orexin (hypocretin)-producing neurons has substantially improved our understanding of this often-disabling disorder and has enabled researchers to move much closer to better therapies.
With support from Wake Up Narcolepsy, Dr. Scammell’s research group has helped define which brain circuits give rise to cataplexy and sleepiness using mouse models of narcolepsy. Cataplexy is episodes of muscle weakness triggered by strong, generally positive emotions, and Dr. Scammell’s group has found that the amygdala is a key brain region for cataplexy. The amygdala is considered a brain region where “emotion meets motion”. For example, the amygdala helps produce emotional reflexes such as freezing with fear or smiling at a friend. It is now clear that in mice with narcolepsy, positive emotions (in response to tasty treats such as chocolate) are relayed by the amygdala to the brainstem, resulting in episodes of muscle weakness.
The amygdala is a complicated brain region, and Dr. Scammell’s research group will use this generous support from Wake Up Narcolepsy to define just which amygdala neurons mediate cataplexy. They anticipate that this will enable development of drugs that target just this brain circuit without causing side effects. This funding will also help generate crucial pilot data that can leveraged to obtain larger research grants from the National Institutes of Health and other organizations. Ultimately, a better understanding of these brain mechanisms will enable researchers and doctors to develop new methods to improve sleepiness, cataplexy, and other symptoms of narcolepsy.
Genetic predisposition of narcolepsy and a new sleep study diagnostic test
Dr. Emmanuel Mignot and his research team are proud to announce that they have recently completed a World Wide Genome Wide Association study to uncover why narcolepsy develops in some individuals but not others. The study was conducted in regular type 1 narcolepsy patients and also in patients who have developed narcolepsy following vaccination with the anti H1N1 swine flu vaccine pandemrix.
We analyzed multiethnic samples from Asians (Korea, Japan and China), African Americans, and Caucasians (Europe, USA) in 5,501 cases and 23,615 controls to study genetic associations with narcolepsy. We discovered overall significant associations in the HLA locus and in 12 other loci of which 6 are entirely new finings. The new findings include association with the Perforin PRF1, Langherin CD207, SIRPG, IL27 and ZFAND2A genes. Six other associations (T cell receptor TRA, TRB, cathepsin CTSH, interferon receptor IFNAR1, ZNF365 and P2RY11) have been reported in earlier studies. Most interestingly, TRA and CTSH genetic effects were stronger in vaccination-induced narcolepsy, while predisposing effects of IFNAR1, TCRB and CD207 were absent or opposite. Functional analysis in two cohorts revealed a functional role for TRA and TRB variants in regulating usage of TRAJ*24, TRAJ*28 and TRBV*4-2 respectively (P<10-8 ). In addition, we found that the IFNAR1 variant associated with narcolepsy increases response to influenza-A infection in dendritic cells. Finally, we found that partitioned narcolepsy heritability was mediated by immune cells, with functional analysis of ENCODE data indicating enrichment of functional elements in Th17, T regulatory and CD8+ T cells. Together these findings define narcolepsy as an autoimmune disease mediated through T cell receptor signaling, with involvement of influenza A (the flu) as a critical trigger. Interestingly, we are also now learning which genetic effects are related to flu infections (langherin, interferon receptor) versus core to the autoimmune process (PRF1, TCRA, HLA). The research is starting to build a detailed model on how the immune system is causing narcolepsy, with possible preventive applications. This research has been written and will be submitted very soon for publication. Additionally we used machine learning to create a probability score for narcolepsy in individuals suspected of having Type 1 narcolepsy, opening the possibility of diagnosing narcolepsy using an at home nighttime sleep study as opposed to current standard, a daytime nap study following a nocturnal sleep study called the Multiple sleep latency test that lasts 24 hrs. Analysis of sleep currently requires visual inspection by trained scoring technicians. We used neural networks in over 3,000 sleep recordings from 10 locations to automate sleep stage scoring, producing a hypnodensity graph – a probability distribution conveying more information than classical hypnograms. Accuracy of sleep stage scoring was validated on 70 subjects assessed by six sleep scorers, forming a more accurate standard for comparison. Our best model performed better than any individual scorer and reached an accuracy of 0.87, while average scorers only reached 0.81. When predictions were weighed by scorer agreement, performance rose to 0.95, indicating a higher consensus in areas of scorer agreement. The method also reliably scores sleep stages down to 5 second epochs instead of the conventional 30 second scoring-epochs. Accuracy did not vary by sleep disorder except for narcolepsy, suggesting scoring difficulties. A narcolepsy biomarker was thus extracted based on unusual sleep-stage overlaps. Validation of the biomarker in an independent dataset of 105 type-1 narcoleptics versus 331 controls and other patients produced a specificity of 0.96 and a sensitivity of 0.91. Similar performances were obtained when tested against a high pretest probability sample of patients with type-2 narcolepsy or idiopathic hypersomnia. Addition of HLADQB1*06:02 typing information (a frequently used genetic marker of type-1 narcolepsy) further increased specificity to 0.99. Our method could reduce costs by decreasing time spent in sleep clinics and automating the diagnosis of narcolepsy. It also opens the possibility of diagnosing narcolepsy using home sleep studies.
This research is under review in nature communication, and also available as a preprint at https://nature-research-under-consideration.nature.com/users/37265-naturecommunications/posts/21655-the-use-of-neural-networks-in-the-analysis-of-sleep-stages-and-thediagnosis-of-narcolepsy
A recent article citing Dr. Mignot’s career in narcolepsy: https://www.theatlantic.com/health/archive/2017/10/narcolepsy-sleep-disorder-stillunsolved/543717/
Thank you for your generous support!
In recent months, Dr. Mignot has been assessing care for patients with narcolepsy and hypersomnia to identify key steps for improving their well-being. This reflection led to a comprehensive plan that sets new goals, including better diagnostics for these conditions, understanding the underlying causes of narcolepsy to develop a blood test, and advancing treatment research with orexin agonists and oxybate salts. As many of Dr. Mignot’s grants are nearing completion, he is seeking new funding through grant proposals. Philanthropic support is crucial to fill funding gaps and ensure continued progress in the field.
ENHANCING DIAGNOSTIC METHODS FOR NARCOLEPSY AND HYPERSOMNIA
As novel treatments for narcolepsy and hypersomnia emerge, there is a pressing need for better diagnostics. Currently, only 50% of patients with narcolepsy type 1 (NT1) are diagnosed and treated, and many with narcolepsy type 2 (NT2) and idiopathic hypersomnia (IH) are often misdiagnosed with depression, leading to years of ineffective antidepressant treatment. The Mignot Lab believes that enhancing diagnostic capabilities in sleep clinics, among healthcare providers, and in the public is crucial for increasing awareness and improving accuracy of diagnosis.
In the clinic, the Mignot Lab uses artificial intelligence (AI) to analyze nocturnal sleep EEG studies and is working to adapt these technologies for home use in diagnosing hypersomnia. It is likely home EEG monitoring will eventually replace the time-intensive Multiple Sleep Latency Test (MSLT) as the diagnostic gold standard. New EEG devices, such as the Dreem headband, which Dr. Mignot helped develop, are being validated for this purpose.
A promising diagnostic strategy involves using wearables and devices, along with questionnaires and genetic analyses from saliva or blood samples. Dr. Mignot collaborated with the UK Biobank, which studies 500,000 individuals, to incorporate questions regarding sleep disorders, including narcolepsy (with data expected in early 2025). The UK Biobank also has actigraphy (motion sensors in consumer-based watches and rings) data in 180,000 participants, that can help assess sleep patterns and activity levels. Dr. Mignot plans to apply for NIH funding to analyze this data, believing that combining cataplexy questions, actigraphy, and genetics can help identify cases of NT1 effectively. The Mignot Lab will also explore diagnosing IH and NT2 using this approach.
To expand awareness among healthcare providers, Dr. Mignot plans to focus outreach on pediatric practitioners for NT1 and psychiatrists for NT2 and IH. Funding and time permitting, he plans to present his lab’s findings at pediatric and psychiatry congresses in 2025. Additionally, he aims to create a comprehensive strategy to educate and screen the public, ultimately guiding diagnosed individuals to specialized care.
ADVANCING RESEARCH ON THE CAUSES OF NARCOLEPSY AND HYPERSOMNIA
A deeper understanding of the underlying causes of narcolepsy and hypersomnia requires bold, basic research. Recent findings reveal that NT1 can be triggered by either the H1N1 or B Victoria influenza strains, but not the common H3N2 strain. Dr. Mignot is exploring how patients with narcolepsy react differently from controls to these flu strains and believes this could lead to the development of a blood test for NT1. The Mignot laboratory is collaborating with institutions in Denmark and other universities to screen for autoantibodies to human proteins and assess T cell reactivity to relevant influenza epitopes (biomarkers for immune response). They are also attempting to measure hypocretin levels in blood, which has been challenging, and plan to incorporate human genetics into their research.
For IH and NT2 patients, the underlying cause is likely more diverse, and an alternative approach incorporating EEG studies and AI is needed to understand their unique symptoms (i.e. brain fog and sleep inertia). The Mignot Lab is also seeking funding to conduct a large-scale genetic study involving 5,000 IH and NT2 patients. They already collected data from a substantial number of these patients, and aim to conduct genetic testing, comparing results with samples from the UK biobank and patients reporting similar symptoms in this large sample. Additionally, they are designing a diagnostic test to assess whether sleepiness in these patients stems from insufficiently non-restorative sleep, an inability to stay awake, a misaligned circadian rhythm, (akin to jet lag without travel), or a combination of these factors. By analyzing the proteomic profiles, the lab could then determine the most effective treatment for each patient—whether it is oxybate, a stimulant, or light therapy/circadian resetting agent—ensuring a personalized approach to care.
OREXIN AGONISTS: ONGOING CLINICAL TRIALS
In recent years, orexin receptor 2 agonists have emerged as a groundbreaking class of new medications for treating narcolepsy and hypersomnia by targeting the orexin receptor 2, the primary receptor involved in orexin signaling. Through orexin agonist trials, meaningful transformations have been observed in many patients, enabling them to resume activities they had previously given up, including hobbies they once loved and social activities, and to achieve self-efficacy. While research is still in its early stages, Dr. Mignot’s team is hopeful that future developments in orexin receptor 1 agonists or dual agonists will expand treatment options for patients.
One exciting discovery is that orexin agonists can help NT1 patients stay alert for the full 40 minutes required in the Maintenance of Wakefulness Test (MWT), unlike untreated patients who can only stay awake for a few minutes, or 10 minutes with traditional treatments, like stimulants and oxybate salts.
Takeda Pharmaceuticals is leading the charge in this field with a recently completed phase 2 clinical trial for their third compound in this class, TAK881, now entering phase 3 trial for NT1. If successful, TAK881 could be the first compound approved for NT1, likely in 2026. In the phase 3 trial, participants will be randomized into groups receiving either the active drug or a placebo. Both the MWT and sleep studies will be conducted to assess efficacy. Patients completing the placebo-controlled portion of the trial will have the option to transition to the active compound for an extension study, aimed at assessing the drug’s long-term safety.
Alkermes, another company, is launching a similar phase 2 trial targeting not only NT1 but also NT2/IH with a once-daily administration compound. It has been shown that orexin agonists also show promise for the treatment of NT2 and IH, though they require a dose that is 2 to 3-times higher than necessary for NT1. Side effects have been limited to an increased urge to urinate (which is manageable), as well as a modest increase in blood pressure, which appears to stabilize or disappear during long-term therapy and is comparable to what is observed with traditional amphetamine-like stimulants.
Orexin agonists appear to be effective and preferred by NT1 patients over previous treatments. However, more research is needed to optimize treatment over long periods of time. For instance, TAK881 must be administered twice-daily; finding an effective, once-daily option would be beneficial, as extended stimulation could disrupt nighttime sleep. It is also unclear whether these medications can improve disturbed nighttime sleep over time in NT1 patients, a common issue typically managed with oxybate salts. Combining orexin agonists with sodium oxybate may provide an ideal solution for some individuals.
EVOLVING OXYBATE TREATMENTS: A NEW ERA FOR NARCOLEPSY AND HYPERSOMNIA
While orexin receptor agonists are a significant advancement in treating narcolepsy and hypersomnia, they are unlikely to address every patient’s needs. Sodium oxybate (Xyrem®), introduced by Jazz Pharmaceuticals decades ago, significantly improved symptoms for patients with NT1 compared to older treatments like stimulants and antidepressants. Recently, it has shown effectiveness in many patients with NT2 and IH, though it is difficult to predict who will benefit the most. Despite this success, sodium oxybate has a high sodium content, which can increase the risk of high blood pressure, like a high-sodium diet. To mitigate this, Jazz Pharmaceuticals has introduced Xywave®, a low-sodium version that replaces sodium with potassium, calcium, and magnesium, making it safer for patients with high blood pressure or fluid retention. The formulation has a slightly different absorption profile, with slower absorption and lower peak concentrations.
Avadel has also introduced a long-acting version of sodium oxybate (Lumriz®). Clinical studies show that Lumriz is as effective as other oxybate salts but requires only a single nighttime dose, compared to the two doses needed for Xyrem® and Xywave®. This change will reduce sleep disruption for patients and their families, who currently must wake up to administer the second dose. The Mignot Lab is curious about the potential of using Lumriz® alongside Xywave®/Xyrem® for a more personalized treatment approach, like how long- and short-acting insulin is used.
LEARN MORE
Please visit Dr. Mignot’s websites which outline his work throughout sleep sciences and narcolepsy. He and his colleagues hope these platforms will attract more like-minded scientists to train and specialize in these areas.
Stanford Center for Narcolepsy
https://med.stanford.edu/narcolepsy.html
Mignot Lab at Stanford
www.mignotlab.com
EMMANUEL MIGNOT, MD, PHD
Craig Reynolds Professor of Sleep Medicine
Director, Stanford Center for Narcolepsy
Dr. Mignot and his colleagues were the first to discover that narcolepsy is an autoimmune disease caused by loss of hypocretin/orexin, a brain chemical needed for staying awake and controlling dreaming. The Stanford Sleep Medicine clinic treats hundreds of narcolepsy patients each year, many of whom volunteer for research studies. Through his work with these volunteers, Dr. Mignot created a database from the records of thousands of patients from multiple ethnic groups, providing an invaluable resource for the field that has led to many breakthroughs. Dr. Mignot’s current research focuses on applications of mobile technology, machine learning, and genetics to the study of sleep and sleep disorders in large population samples. He is the recipient of numerous research grants and honors, including a 2023 Breakthrough Prize in Life Sciences. Dr. Mignot is co-author of more than 200 original scientific publications and is an active member of several professional and governmental organizations, including the National Academy of Sciences and National Academy of Medicine.
OPPORTUNITY TO SUPPORT THIS RESEARCH
Through the generous support of philanthropy, Stanford narcolepsy researchers continue to drive innovative strategies to improve prediction, diagnoses, and treatments. Private funding fuels the advancements that will change the lives of people with narcolepsy.
Make an Online Gift:
1) Visit https://give.stanford.edu/stanford-medicine?olc=06421
2) Choose “Other Stanford Designation” in the drop-down box.
3) Under “Other”, enter “Emmanuel Mignot Narcolepsy Research”
Our research team at Boston Children’s Hospital are working on many projects to improve the care of children, adolescent and young adults with narcolepsy. Diagnostic delays in narcolepsy are unfortunately common. We are working on a screening tool that can be used by health care providers and school-based professionals to identify patients with narcolepsy symptoms and direct them towards to appropriate diagnostic tests. We are also working on developing and validating patient-reported outcomes for pediatric narcolepsy. These outcome measures are important to identify what symptoms and functions are important to people with narcolepsy in order to guide treatments. Last, disrupted nighttime sleep (DNS) is a common problem for people with narcolepsy. We are studying DNS in pediatric narcolepsy and assessing its effect on memory, mood, and attention.
Dr. Kiran Maski says, “I am incredibly grateful for the support of Wake Up Narcolepsy, our wonderful research participants, and our dedicated research staff that make this work possible!”
Narcolepsy and idiopathic hypersomnia usually begin in early adolescence, but diagnostic delays ranging 5-10 years are common, impacting disease burden. To improve early identification of these treatable conditions, Dr. Kiran Maski, Boston Children’s, developed and validated the Pediatric Hypersomnolence Survey (PHS). This is a screening tool that can be used in clinical offices and the community to assess sleepy kids and teens. We hope this survey can help triage kids/teens with narcolepsy/idiopathic hypersomnia more directly to sleep medicine providers for timely diagnosis.
Click here to access the survey.
This work was just accepted by the journal Neurology https://pubmed.ncbi.nlm.nih.gov/35314496/.
The development of the PHS was funded by Covery Health Care and Wake Up Narcolepsy.
“With your research funds from last year (2022), we were able to:
Wake Up Narcolepsy (WUN) has partnered with American Academy of Sleep Medicine Foundation (AASM Foundation) to co-fund a Strategic Research Grant for Central Disorders of Hypersomnolence.
Strategic Research Grant on Hypersomnolence Update
Prepared for Wake Up Narcolepsy on September 15, 2023
The American Academy of Sleep Medicine Foundation (AASM Foundation) recently partnered with Wake Up Narcolepsy to award a Strategic Research Grant on topics related to narcolepsy because both organizations are passionate about improving the lives of people living with sleep disorders.
As a result of this partnership, the AASM Foundation’s Board of Directors recently approved a $100,000 Strategic Research Grant to principal investigators, Laura Lewis, PhD and Ewa Beldzik, PhD, at Massachusetts Institute of Technology. This grant was funded in collaboration with Wake Up Narcolepsy. Their topic is Imaging the Brainstem and Hypothalamic Activity Underlying Sleepiness-Induced Attention Deficits in Humans.
Broad scientific consensus has called for new biomarkers for hypersomnolence disorders, which is essential to improve their diagnosis and treatment. This project aims to image activity in the brain circuits responsible for sleep-wake regulation and understand how it is linked to cognitive symptoms. This project uses a noninvasive imaging tool, enabling translation to human patients. The AASM Foundation and Wake Up Narcolepsy funding is enabling this research to translate novel MRI-based tools to understand the neural basis of hypersomnolence disorders.
As a partner supporting the AASM Foundation’s Strategic Research Grant program, Wake Up Narcolepsy appointed representatives to participate in the peer-review process, and the organization agreed to co-fund a portion of the grant once approved by the AASM Foundation’s Board of Directors.
The AASM Foundation has distributed more than $25 million in research funding since 1998, and we are proud to partner with organizations like Wake Up Narcolepsy as we work together to champion a bright future in sleep health.
Strategic Research Grant on Hypersomnolence Update
Prepared for Wake Up Narcolepsy on October 30, 2024
As a result of this ongoing partnership, the AASM Foundation’s Board of Directors recently approved a $100,000 Strategic Research Grant to investigator Aaron Schokman, Bsc, Mphil, PhD, at the University of Sydney. This grant was funded in collaboration with Wake Up Narcolepsy. His topic is Co-production and Psychometric Validation of a Patient Reported Outcome Measure of the Impact Narcolepsy has on the Daily Life of Adult Persons Living with Narcolepsy Type 1 and 2.
Few self-reported questionnaires used in narcolepsy are adequately validated, fit for purpose, or capture the broad impact narcolepsy has on daily life. This study intends to use best-practice methodology in psychometrics and questionnaire design to create a “one-stop-shop” patient-reported outcome measure that will capture all domains considered meaningful to those living with narcolepsy, using the language and terminology they use. The questionnaire will be a validated means to assess the impact of narcolepsy and treatment efficacy.
The Central Disorders of Hypersomnolence Research funding opportunities are open to
Basic and Transitional Studies for Understanding Central Disorders of Hypersomnolence
Improvement of Diagnosis for Central Disorders of Hypersomnolence
Pharmacologic Treatments for Central Disorders of Hypersomnolence
Patient-centered Outcome Measures for Central Disorders of Hypersomnolence
Behavioral and Psychological Treatments for Central Disorders of Hypersomnolence
As a partner supporting the AASM Foundation’s Strategic Research Grant program, Wake Up Narcolepsy appointed representatives to participate in the peer-review process, and the organization agreed to co-fund a portion of the grant once approved by the AASM Foundation’s Board of Directors.
The AASM Foundation has distributed more than $1.7 million in hypersomnolence research since 2022, and we are proud to continue to partner with organizations like Wake Up Narcolepsy as we work together to improve the sleep health of all people.
Limbic system-brainstem interactions in cataplexy and REM sleep atonia
Youth Investigator Brandon Toth, Co-Investigator: Christian Burgess, PhD
“Cataplexy often occurs in response to strong, positive emotions; however, despite significant research efforts, it remains unclear what neural mechanisms trigger cataplexy. Muscle tone is regulated by regions of the brainstem, which are directly innervated by neurons in the limbic system, where emotions are processed. The goal of this proposal is to clarify how limbic system-brainstem interactions promote the loss of muscle tone during cataplexy. We will use a combination of cutting edge tools in basic neuroscience, including neural recording and manipulation, in animal models of narcolepsy to investigate these circuits. Understanding the involvement of the limbic system in the regulation of muscle tone will not only open up new avenues of treatment for narcolepsy, but also potentially for other sleep disorders involving abnormal motor control across states, such as REM-sleep behavior disorder.”
View the 2024 progress report from Brandon Toth here
Dr. John Peever, PhD
“First and foremost, my lab is grateful for WUN support. The provided funds will allow us to continue addressing the underlying causes of sleepiness and cataplexy in people for narcolepsy. We will use these funds to determine how loss of orexin cells in people with narcolepsy affects brain function. Our goal is to understand how orexin cell loss affects different brain areas to cause sleepiness and narcolepsy.”
The Behavioral Sleep Medicine Lab at Northwestern University, led by Jason Ong, has been very active in research aimed at improving the health-related quality of life in people with narcolepsy and idiopathic hypersomnia. In January 2020, our paper from a study that was funded by WUN was accepted for publication at Behavioral Sleep Medicine. This study involved a series of interviews with PWN to better understand how the symptoms of narcolepsy impact quality of life and to seek patient input on how to provide more relevant mental health services for PWN. In December 2021, we published our first study using a novel cognitive-behavior therapy for hypersomnia (CBT-H) in the Journal of Clinical Sleep Medicine. CBT-H is a 6-session telehealth program using techniques such as following a regular daytime and nighttime schedule, managing depression and anxiety associated with hypersomnia, and improving self-efficacy, which refers to the ability to achieve a goal. We found that 40% of participants showed a significant reduction in depressive symptoms and the telehealth delivery allowed participants from around the US to participate.
In addition to these publications, we have two current projects. One project aims to develop an app specifically designed to monitor and manage symptoms of hypersomnia based on our CBT-H program. The first beta version is nearly ready for testing. The second project is an NIH-funded study examining the use of mindfulness meditation to help reduce depression and anxiety symptoms in people with narcolepsy. This project is currently recruiting participants.
Dr. Jason Ong says, “We greatly appreciate the support from WUN, which has allowed us to carry out and complete these projects during the pandemic. We hope that our work will provide evidence-based strategies using digital and tele-health delivery to improve the mental health and quality of life among PWN.”
1. Helped Masters student finish her Masters in Narcolepsy and depression
2. Started second large study qualitatively evaluating symptoms of Narcolepsy in kids.
3. Published paper on clinical manifestations of Narcolepsy.
4. Adolescent medicine Staff dedicated to the Narcolepsy clinic to help navigate the issues some adolescents face with Narcolepsy.
5. Hosted a family event.
Dr. Indra Narang from Sick Kids-
Clinical Manifestations of Childhood Narcolepsy.
We evaluated symptoms of children who presented with symptoms of Narcolepsy and were
subsequently diagnosed with Narcolepsy. These data were obtained just after diagnosis of Narcolepsy in
33 children prior to any child commencing medications to alleviate their symptoms. The mean age at
diagnosis was 10.4 years, the youngest age being 3.9 years and oldest 17 years of age. All children had
excessive daytime sleepiness. Of these children, 64% had cataplectic facies such as tongue protrusion,
facial droop, facial grimacing and/or head rolling. The remaining 36% had characteristic cataplexy with
muscle weakness of limbs and /or falling to the ground with laughter/excitement. Interestingly, children
with cataplectic facies tended to be younger and had higher body weights. At presentation, the study
also found that 21% of children had hallucinations and 9% had sleep paralysis.
All brain scans (MRI brain) and all testing for epilepsy using an EEG were negative for this group of
children. This study has increased awareness of Narcolepsy in children and highlighted the different
manifestations of Narcolepsy in children. Link to the published study.
Depressive Symptoms, Sleep Patterns and Physical Activity in Adolescents with Narcolepsy
In this study, our group were interested to understand the association between depressive symptoms,
sleep patterns (duration and quality), excessive daytime sleepiness and physical activity in adolescents
with narcolepsy and to compare them to controls. We recruited 30 adolescents with a mean age of 13.8
years diagnosed with Narcolepsy and 30 controls subjects.
Adolescents completed many questionnaires evaluating how 1) sleepy they were 2) the presence of
depressive symptoms, 3) sleep disturbance, 4) physical activity levels. They also used wrist based
actigraphy for one week to measure total sleep time.
This study showed that adolescents with Narcolepsy had more depressive symptoms than adolescents
who did not have Narcolepsy. Depressive symptoms were associated with excessive daytime sleepiness,
more night time sleep disturbance and lower physical activity levels.
This study has re-inforced a multi-disciplinary care approach to adolescents with Narcolepsy ensuring
that mental health issues are addressed early in the consultation process. Further, we have emphasized
the message that improving nocturnal sleep quality and good sleep hygiene as well as promoting
physical activity may provide an opportunity to reduced depressive symptoms in adolescents with
Narcolepsy. This study has not been published yet but is under review.
Qualitative Evaluation of symptoms of Narcolepsy
This study which we have just commenced is evaluating which specific symptoms impact patients with
Narcolepsy. We are also interested to know how these symptoms may affect their daily lives.
WUN Research GrantsWUN offers both unrestricted and restricted grants in several areas of research. |