Blog: Research

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Narcolepsy UK welcomes second neurological patient experience survey

7 July 2016

The Neurological Alliance has launched its second neurological patient experience survey. The survey aims to collect vital information about the experiences of care received by people affected by neurological conditions and help us to understand how much progress has been made in improving neurological services.

The survey is open until 30 September 2016 and the Alliance welcomes responses from anyone with a neurological condition living in England.

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Pitolisant / Wakix® Update

23 May 2016

I thought it would be useful to provide you all with an update on where progress with patient access has reached for the new, first-in- class, medicine known as Wakix® or Pitolisant. This oral medicine acts on histamine H3 receptors in the brain, leading to the release of increased histamine, thereby enhancing wakefulness and alertness.

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Research project about children with narcolepsy needs volunteers

12 May 2016

The Paediatric Narcolepsy Project research programme is investigating school performance and well-being in children with narcolepsy aged 8-16 years old. The project has been set up by The University of Leeds and has received ethical approval from the School of Psychology's Research Ethics Committee (ref: 15-0198, date: 03.08.15). The research is taking place in the United Kingdom and in the Republic of Ireland. They are still looking for families across the UK and Republic of Ireland to take part in this research.

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NHS public consultation - Please respond before 20th April

25 March 2016

NHS England Specialised Services Clinical Commissioning Policy
Sodium oxybate for symptom control of narcolepsy with cataplexy (children)

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New research into potential "orexin" medication

22 March 2016

Reset Therapeutics, Inc., announced a collaboration with an affiliate of Alkermes plc for the discovery, development and commercialization of novel orexin receptor modulators from Reset’s drug discovery platform. The orexin system is a key modulator of wakefulness, appetite and mood, and its dysregulation is associated with central nervous system (CNS) disorders such as narcolepsy and depression.

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UK study links Pandemrix to narcolepsy in adults

11 February 2016

Risk of Narcolepsy after AS03 Adjuvanted Pandemic A/H1N1 2009 Influenza Vaccine in Adults: A Case-Coverage Study in England.

Please see the attached link to an advance epublication detailing the findings of the above investigation.

www.ncbi.nlm.nih.gov/pubmed/26856903

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Hope for the future?

27 September 2015

An interesting development suggests that a cure for narcolepsy might one day be possible.

Narcolepsy is now generally believed to be an auto-immune disorder resulting from the destruction of cells within the brain that are responsible for the production of hypocretin. As such, replacement or regeneration of those cells might lead to a treatment for narcolepsy that actually cures the condition, rather than just alleviates the symptoms.

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A day full of positives in Germany

11 May 2015

Narcolepsy UK chairman Matt O’Neill reports on what was a fruitful trip to Germany for European Narcolepsy Day.

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