Narcolepsy Network

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Narcolepsy Network
Website narcolepsynetwork.org

Narcolepsy Network, Inc. is a non-profit national [1] patient support organization that helps raise awareness and advocates for research and development for the understanding and treatment of narcolepsy. [2] [3] The organization is located in North Kingstown, Rhode Island. [4]

Contents

History

Narcolepsy Network's roots can be traced back to its predecessor, the American Narcolepsy Association (ANA), for which it formerly functioned as a task force. In May 1985, the ANA began its reorganization, leading to the newly formed Narcolepsy Network. [5]

The Narcolepsy Network Database

Initially a task force was put together of a small group of members to determine the structure of the database. Because the data was coming from a number of different centres, this task force had to standardise the data so the differently sourced data was compatible. A key feature of the database is a web based, protected data entry interface, which makes sure the data that is entered is standardised and usable. [6] A separate children's database was also produced. [7]

Structure and sources of Data

The date is sourced from 27 difference sleep centres, across 13 different European countries. [6] The data is split into two bodies, supplementary and mandatory. [7] The cases are meant to be followed up - that is, the follow-up information about the outcome of the case needs to be entered into the database to validate it. The database has strong security protocols that protect the privacy of the patients details.[ citation needed ]

Database size

As of 2015, the database held details on 1079 patients from 18 different sleep centres. [7]

Related Research Articles

<span class="mw-page-title-main">Modafinil</span> Eugeroic medication

Modafinil, sold under the brand name Provigil among others, is a wakefulness-promoting medication used primarily to treat narcolepsy. It is classified as an eugeroic rather than a classical psychostimulant due to its lack of euphoric effects. Modafinil's unique mechanism of action sets it apart from other stimulants, making it a valuable medication for managing sleep disorders.

Somnolence is a state of strong desire for sleep, or sleeping for unusually long periods. It has distinct meanings and causes. It can refer to the usual state preceding falling asleep, the condition of being in a drowsy state due to circadian rhythm disorders, or a symptom of other health problems. It can be accompanied by lethargy, weakness and lack of mental agility.

Hypersomnia is a neurological disorder of excessive time spent sleeping or excessive sleepiness. It can have many possible causes and can cause distress and problems with functioning. In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), hypersomnolence, of which there are several subtypes, appears under sleep-wake disorders.

A microsleep is a sudden temporary episode of sleep or drowsiness which may last for a few seconds where an individual fails to respond to some arbitrary sensory input and becomes unconscious. Episodes of microsleep occur when an individual loses and regains awareness after a brief lapse in consciousness, often without warning, or when there are sudden shifts between states of wakefulness and sleep. In behavioural terms, MSs may manifest as droopy eyes, slow eyelid-closure, and head nodding. In electrical terms, microsleeps are often classified as a shift in electroencephalography (EEG) during which 4–7 Hz activity replaces the waking 8–13 Hz background rhythm.

Cataplexy is a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically triggered by emotions such as laughing, crying, or terror. Cataplexy affects approximately 20% of people who have narcolepsy, and is caused by an autoimmune destruction of hypothalamic neurons that produce the neuropeptide hypocretin, which regulates arousal and has a role in stabilization of the transition between wake and sleep states. Cataplexy without narcolepsy is rare and the cause is unknown.

<span class="mw-page-title-main">European Monitoring Centre for Drugs and Drug Addiction</span> Dana vongamath

The European Monitoring Centre for Drugs and Drug Addiction (EMCDDA) is an agency of the European Union located in Lisbon, Portugal, and established in 1993. In June 2022, the Council of the European Union approved a reform of the organization which will lead to an extension of its mandate and a change of name for "European Union Drugs Agency."

<span class="mw-page-title-main">Sodium oxybate</span> Medication to treat symptoms of narcolepsy

Sodium oxybate, sold under the brand name Xyrem among others, is a medication used to treat symptoms of narcolepsy: sudden muscle weakness and excessive daytime sleepiness. It is used sometimes in France and Italy as an anesthetic given intravenously; it is also approved and used in Italy and in Austria to treat alcohol dependence and alcohol withdrawal syndrome.

EUROCAT is a network of population-based congenital anomaly registries across Europe for the monitoring, surveillance and research of congenital anomalies. It was founded in 1979.

The European Soil Database is the only harmonized soil database in Europe from which many other data information and services are derived. For instance, the European Soil Database v2 Raster Library contains raster (grid) data files with cell sizes of 1km x 1km for a large number of soil related parameters. Each grid is aligned with the INSPIRE reference grid. These rasters are in the public domain and allow expert users to use the data for instance to run soil-, water- and air related models.. The European Soil Database may be downloaded from the European Soil Data Center.

<span class="mw-page-title-main">Sleep medicine</span> Medical specialty devoted to the diagnosis and therapy of sleep disturbances and disorders

Sleep medicine is a medical specialty or subspecialty devoted to the diagnosis and therapy of sleep disturbances and disorders. From the middle of the 20th century, research has provided increasing knowledge of, and answered many questions about, sleep–wake functioning. The rapidly evolving field has become a recognized medical subspecialty in some countries. Dental sleep medicine also qualifies for board certification in some countries. Properly organized, minimum 12-month, postgraduate training programs are still being defined in the United States. In some countries, the sleep researchers and the physicians who treat patients may be the same people.

The European Sleep Apnea Database (ESADA) is a collaboration between European sleep centres as part of the European Cooperation in Science and Technology (COST) Action B 26. The main contractor of the project is the Sahlgrenska Academy at Gothenburg University, Institute of Medicine, Department of Internal Medicine, and the co-ordinator is Jan Hedner, MD, PhD, Professor of Sleep Medicine.

<span class="mw-page-title-main">Pandemrix</span> Flu vaccine

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<span class="mw-page-title-main">Narcolepsy</span> Human sleep disorder that involves an excessive urge to sleep and other neurological features

Narcolepsy is a chronic neurological disorder that involves a decreased ability to regulate sleep–wake cycles. Symptoms often include periods of excessive daytime sleepiness and brief involuntary sleep episodes. Narcolepsy paired with cataplexy is evidenced to be an autoimmune disorder. These experiences of cataplexy can be brought on by strong emotions. Less commonly, there may be vivid hallucinations or an inability to move while falling asleep or waking up. People with narcolepsy tend to sleep about the same number of hours per day as people without it, but the quality of sleep tends to be lessened.

Pitolisant, sold under the brand name Wakix among others, is a medication used for the treatment of excessive daytime sleepiness in adults with narcolepsy. It is a histamine 3 (H3) receptor antagonist/inverse agonist. It represents the first commercially available medication in its class, so that the US Food and Drug Administration (FDA) declares it a first-in-class medication. Pitolisant enhances the activity of histaminergic neurons in the brain that function to improve a person's wakefulness.

<span class="mw-page-title-main">Nap</span> Short period of sleep during typical waking hours

A nap is a short period of sleep, typically taken during daytime hours as an adjunct to the usual nocturnal sleep period. Naps are most often taken as a response to drowsiness during waking hours. A nap is a form of biphasic or polyphasic sleep, where the latter terms also include longer periods of sleep in addition to one period. For years, scientists have been investigating the benefits of napping, including the 30-minute nap as well as sleep durations of 1–2 hours. Performance across a wide range of cognitive processes has been tested.

<span class="mw-page-title-main">Eugeroic</span> Drugs for wakefulness and alertness

Eugeroics, also known as wakefulness-promoting agents and wakefulness-promoting drugs, are a class of drugs that promote wakefulness and alertness. They are medically indicated for the treatment of certain sleep disorders including excessive daytime sleepiness (EDS) in narcolepsy or obstructive sleep apnea (OSA). Eugeroics are also often prescribed off-label for the treatment of EDS in idiopathic hypersomnia. In contrast to classical psychostimulants, such as methylphenidate and amphetamine, which are also used in the treatment of these disorders, eugeroics typically do not produce marked euphoria, and, consequently, have a lower addictive potential.

Idiopathic hypersomnia(IH) is a neurological disorder which is characterized primarily by excessive sleep and excessive daytime sleepiness (EDS). The condition typically becomes evident in early adulthood and most patients diagnosed with IH will have had the disorder for many years prior to their diagnosis. As of August 2021, an FDA-approved medication exists for IH called Xywav, which is oral solution of calcium, magnesium, potassium, and sodium oxybates; in addition to several off-label treatments (primarily FDA-approved narcolepsy medications).

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Pediatric narcolepsy refers to conditions of narcolepsy during childhood and adolescence. In a pediatric setting, people with narcolepsy still exhibit the classical tetrad symptoms of narcolepsy, and thus is possible for both type 1 and type 2 narcolepsy to develop in adolescence.

References

  1. "About Us".
  2. "The Mystery of Narcolepsy". Psychology Today. Retrieved 2018-03-12.
  3. "Narcolepsy Network 2014 Conference Scholarship Fund".
  4. "Contact Us « Narcolepsy Network". narcolepsynetwork.org. Retrieved 2018-03-12.
  5. "NN History « Narcolepsy Network". narcolepsynetwork.org. Retrieved 2018-03-12.
  6. 1 2 Khatami, Ramin; Luca, Gianina; Baumann, Christian; et al. (June 2016). "The European Narcolepsy Network (EU-NN) database". Journal of Sleep Research. 25 (3): 359. doi: 10.1111/jsr.12348 . PMID   26809504.
  7. 1 2 3 Khatami, Ramin; Luca, Gianina; Baumann, Christian; et al. (June 2016). "The European Narcolepsy Network (EU-NN) database". Journal of Sleep Research. 25 (3): 360. doi: 10.1111/jsr.12348 . PMID   26809504.