Norwegian Narcolepsy RegisterPrevalence of narcolepsy with cataplexy in Norway. Heier MS, Evsiukova T, Wilson J, Abdelnoor M, Hublin C,Ervik S. Acta Neurol Scand. 2009 Oct;120(4):276-80

Norwegian Narcolepsy Register

Egil Midtlyng Norwegian Resource Center for AD/HD, TS and Narcolepsy

Narcolepsy, not so rare – but..

This imply 200 individuals with narcolepsy for each million Norwegians - or

For each individual with narcolepsy there is 5000 without narcolepsy

How many consults a general practioner with 1000 – 1500 on his list?

In Norway there is about 5 000 general practioners

Each fifth – each tenth of them will see one patient with narcolepsy

Prevalence of narcolepsy with cataplexy in Norway. Heier MS, Evsiukova T, Wilson J, Abdelnoor M, Hublin C,Ervik S. Acta Neurol Scand. 2009 Oct;120(4):276-80.

States that the results of the study indicate a prevalence of 0.022% and approximately 1000 patients with narcolepsy with cataplexy in Norway.


It takes from 10 to 15 years from the first signs of symptoms to a diagnostic conclusion is drawn and the treatment can be started.

Health-related quality of life in narcolepsy. Ervik S, Abdelnoor M, Heier MS, Ramberg M, Strand G

Acta Neurol Scand. 2006 Sep;114(3):198-204.

Norwegian patient registry reported 210 – 230 cases in 2010. Why so few?


Why does it take so long?

Rare patients?: Over the years the specialist health care have seen

Consultations G47.4 ICD-10 (Narcolepsy) 1999 10 2000 6 2001 10 2002 7 2003 17 2004 33 2005 24 2006 38 2007 12 2008 12 2009 21


A rear event: April 26. 2009

General view of the Aztec stadium during the Mexican league football match between America and Tecos


In August 2010 the Swedish authority reported that it was investigating six cases of narcolepsy reported by health care professionals as a possible adverse event following the use of Pandemrix vaccine, used during the H1N1 2009 pandemic.

This was followed shortly by reports from the Finnish National Institute for Health and Welfare (THL) noting there had been a more than expected number of cases of narcolepsy in children and adolescents that year.

the European Centre for Disease Prevention and Control (ECDC) requested and funded a consortium of European researchers (VAESCO) to estimate the risk of Guillain-Barré syndrome following pandemic influenza A (H1N1) 2009 vaccination.

The association between narcolepsy and vaccination against the 2009 pandemic influenza A (H1N1) virus was initially suggested in 2010. (Dauvilliers et. al. 2010).


Risk and individuals • A vaccine that protects children from a fatal desease carries a 0,001 % risk

of permanent disability

• One of 100 000 vaccinated children will be permanently disabled


• The second statement calls up an image of an individual child who is permanently disabled by the vaccine. The 99 999 safely vaccinated have faded into the background

Daniel Kahneman

Professor of Psychology and Public Affairs Nobel Prize in Economic Sciences (2002),

Author:Thinking, Fast and Slow, 2011 pg. 329



Norwegian Narcolepsy Register - Balance between high quality individual data and statistical power.

Data will be collected •by questionnaires sent to patient/parents and specialists.

• Symptoms (excessive daytime sleepiness, cataplexy, debut) • other diseases • family- and socioeconomic data • examinations by health specialists • diagnosis (AASM and Brighton ciriteria) • results from Multiple Sleep Latency Test • Polysomnography • CSF hypocretin • Status on Human Leukocyte Antigens HLADQB1*0602.

• Data from Norwegian Prescription Database (Ritalin, Concerta, Modafinil, Xyrem, other). • Diagnosis from the Norwegian Patient Registry • Register for infectious diseases • Norwegian Immunisation Register (SYSVAK) will be added. • by follow up studies



36 vaccinated children and adolescents 4 – 19 years new cases of confirmed narcolepsy were included during 2010 and 2011. Median age 11 years. Hypocretin levels were low for 27, borderline for 1 and unknown for 8

During the same periode 6 unvaccinated cases could be included. Median age 15 years, 3 with documented cataplexy and 3 with low hypocretin values. Preliminary resuts Norway: A minimum

incidence of 3.8/100 000/Y in vaccinated children during 2010-2011, compared to 0.6/100 000/Y in unvaccinated children during the same period.

These results are similar to investigations in Finland, Sweden and Ireland

Investigation of an increase in the incidence of narcolepsy in 2009/2010.Preliminary data from Norway


• NNR will be open to include all patients with narcolepsy in Norway and will provide better data for comparative analysis and analysis of timeline.

• Reports and scientific publications will be published, particularly reports on new cases, the total number of patients with the diagnosis, and the time between the first symptoms to a diagnostic conclusion and treatment.

• NNR will work closely with international research on narcolepsy


Thank you for your attention!


Documents

Norwegian Narcolepsy RegisterPrevalence of narcolepsy with cataplexy in Norway. Heier MS, Evsiukova T, Wilson J, Abdelnoor M, Hublin C,Ervik S. Acta Neurol Scand. 2009 Oct;120(4):276-80