Multiple sclerosis registries in Europe - results of a systematic survey.
BACKGROUND
Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data.


METHODS
National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries' leaders, followed by telephone interviews with them.


RESULTS
Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients' perspectives were only collected in six registries.


CONCLUSIONS
The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.
Neurological Rehabilitation Center Quellenhof, Kuranlagenallee 2, D-75323 Bad Wildbad, Germany peter.flachenecker@sana.de.
Peter
P
Flachenecker
University Medical Center, University of Göttingen, Germany.
Karoline
K
Buckow
University of Sassari, Italy.
Maura
M
Pugliatti
University Hospital Sestre milosrdnice, Croatia.
Vanja Bašić
VB
Kes
Liguria and Tuscany MS Register, Italy.
Mario A
MA
Battaglia
All-Russian MS Society, Russia.
Alexey
A
Boyko
University of Lyon, France.
Christian
C
Confavreux
University Medical Center, University of Göttingen, Germany.
David
D
Ellenberger
Association of MS Societies of Croatia, Croatia.
Danica
D
Eskic
Institute of Life Sciences, College of Medicine, Swansea University, UK.
David
D
Ford
University Medical Center, University of Göttingen, Germany.
Tim
T
Friede
German MS Society, Germany.
Jan
J
Fuge
Karolinska Institute, Sweden.
Anna
A
Glaser
Karolinska Institute, Sweden.
Jan
J
Hillert
UK MS Society, UK.
Edward
E
Holloway
Greek MS Society, Greece.
Eva
E
Ioannidou
University Hospital, Switzerland.
Ludwig
L
Kappos
European MS Platform, Brussels, Belgium.
Elisabeth
E
Kasilingam
Danish MS Registry, Copenhagen University Hospital, and Department of Clinical Epidemiology, Clinical Institute Aarhus University, Denmark.
Nils
N
Koch-Henriksen
University Hospital, Switzerland.
Jens
J
Kuhle
Consortium Mario Negri Sud, Chieti, Italy.
Vito
V
Lepore
UK MS Society, UK.
Rod
R
Middleton
Norwegian MS Registry and Biobank, Haukeland University Hospital, Norway/KG Jebsen Centre for MS Research, University of Bergen, Norway/University of Bergen, Norway.
Kjell-Morton
KM
Myhr
University of Thessaloniki, Greece.
Anastasios
A
Orologas
MS Centre of Catalonia (Cemcat), Vall d'Hebron University Hospital, Barcelona, Spain.
Susana
S
Otero
German MS Society, Germany.
Dorothea
D
Pitschnau-Michel
University Medical Center, University of Göttingen, Germany.
Otto
O
Rienhoff
MS Centre of Catalonia (Cemcat), Vall d'Hebron University Hospital, Barcelona, Spain.
Jaume
J
Sastre-Garriga
European MS Platform, Brussels, Belgium.
Tsveta
T
Schyns-Liharska
MS Society of Serbia, Belgrade, Serbia.
Dragana
D
Sutovic
European MS Platform, Brussels, Belgium.
Christoph
C
Thalheim
Neurosciences and Sense Organs, University of Bari, Italy.
Maria
M
Trojano
All-Russian MS Society, Russia.
Yan V
YV
Vlasov
University Hospital, Switzerland.
Ozgür
O
Yaldizli
D016208:Databases, Factual; D005060:Europe / Q000453:epidemiology; D006801:Humans; D009103:Multiple Sclerosis / Q000453:epidemiology* / Q000628:therapy; D018579:Patient Selection; D012042:Registries; D011795:Surveys and Questionnaires / Q000592:standards; D016896:Treatment Outcome
Europe; Multiple sclerosis; registries