Neuromyelitis optica in Austria in 2011: to bridge the gap between neuroepidemiological research and practice in a study population of 8.4 million people.
BACKGROUND
In 2008 the Austrian Task Force for Neuromyelitis Optica (NMO) started a nation-wide network for information exchange and multi-centre collaboration. Their aim was to detect all patients with NMO or NMO spectrum disorders (NMO-SD) in Austria and to analyse their disease courses and response to treatment.


METHODS
(1) As of March 2008, 1957 serum samples (of 1557 patients) have been tested with an established cell based immunofluorescence aquaporin-4 antibody (AQP4-ab) assay with a high sensitivity and specificity (both >95%). All tests were performed in a single reference laboratory (Clinical Dept. of Neurology of the Innsbruck Medical University). (2) A nation-wide survey with several calls for participation (via email newsletters, articles in the official journal of the Austrian Society of Neurology, and workshops) was initiated in 2008. All collected data will be presented in a way that allows that every individual patient can be traced back in order to ensure transparency and to avoid any data distortion in future meta-analyses. The careful and detailed presentation allows the visualization and comparison of the different disease courses in real time span. Failure and response to treatment are made visible at one glance. Database closure was 31 December 2011. All co-operators were offered co-authorship.


RESULTS
All 71 NMO- or NMO-SD patients with AQP4-ab positivity (age range 12.3 to 79.6 years) were analysed in detail. Sex ratio (m:f = 1:7) and the proportion of patients without oligoclonal bands in cerebrospinal fluid (86.6%) were in line with previously published results. All identified patients were Caucasians.


CONCLUSIONS
A nationwide collaboration amongst Austrian neurologists with good network communications made it possible to establish a database of 71 AQP4-ab positive patients with NMO/NMO-SD. This database is presented in detail and provides the basis for further studies and international cooperation in order to investigate this rare disease.
Department of Neurology, Sozialmedizinisches Zentrum Ost Donauspital, Vienna, Austria ; Department of Neurology, Karl Landsteiner Institute for Neuroimmunological and Neurodegenerative Disorders, Vienna, Austria.
Fahmy
F
Aboul-Enein
Thomas
T
Seifert-Held
Simone
S
Mader
Bettina
B
Kuenz
Andreas
A
Lutterotti
Helmut
H
Rauschka
Paulus
P
Rommer
Fritz
F
Leutmezer
Karl
K
Vass
Agathe
A
Flamm-Horak
Robert
R
Stepansky
Wilfried
W
Lang
Elisabeth
E
Fertl
Thomas
T
Schlager
Thomas
T
Heller
Christian
C
Eggers
Georg
G
Safoschnik
Siegrid
S
Fuchs
Jörg
J
Kraus
Hamid
H
Assar
Stefan
S
Guggenberger
Martin
M
Reisz
Peter
P
Schnabl
Martina
M
Komposch
Philipp
P
Simschitz
Alena
A
Skrobal
Alexander
A
Moser
Mario
M
Jeschow
Dorothea
D
Stadlbauer
Manfred
M
Freimüller
Michael
M
Guger
Susanne
S
Schmidegg
Claudia
C
Franta
Vera
V
Weiser
Stefan
S
Koppi
Margret
M
Niederkorn-Duft
Bettina
B
Raber
Iris
I
Schmeissner
Julia
J
Jecel
Alexander
A
Tinchon
Maria K
MK
Storch
Markus
M
Reindl
Thomas
T
Berger
Wolfgang
W
Kristoferitsch
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001317:Austria / Q000453:epidemiology; D003710:Demography; D003937:Diagnosis, Differential; D015340:Epidemiologic Research Design; D006801:Humans; D008297:Male; D008875:Middle Aged; D009471:Neuromyelitis Optica / Q000097:blood / Q000175:diagnosis / Q000453:epidemiology*; D055815:Young Adult