Sifap

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Sifap ("stroke in young Fabry patients") is a Pan-European study dedicated to investigating the correlation of juvenile stroke and a genetic disorder known as Fabry's disease. It was initiated by University of Rostock, Germany.[1] In recruiting 5,000 patients aged 18 to 55 it will be the largest study on stroke in the young. Approximately 50 study centres from about 15 European countries are participating in the project. The study is divided into two parts: sifap1 and sifap2. Whereas sifap1 analyses the frequency of Fabry disease within the patient cohort, sifap2 controls and investigates the rehabilitation phase of diagnosed Fabry patients.

Background[edit]

The goal of the study is to show that Fabry disease has to be considered to be one of the most frequent genetic causes of juvenile stroke. To date the frequency of Fabry disease among general population has been estimated to be around 1:40,000. However, recent investigations have shown that Fabry disease can occur in 1 of 83 stroke patients aged 18–55 and between 1 of 3,500 to 1 of 4,500 individuals of the general population. Sifap aims at scientifically testing and supporting these findings.

Progress[edit]

After the proof-of-principle phase (April to December 2007) the official start of the study was January 1, 2008. Sifap1 patients were recruited until June 30, 2009. Sifap2 runs simultaneously, and is scheduled to conclude on June 30, 2012.

Technique[edit]

Preparation of the robot for the analysis

One of sifap’s unique characteristics is the fully automated analysis and storage of specimens in combination with the complete digital and web-based data handling. A pipetting robot extracts DNA from specimens and analyses them for Fabry disease. Afterwards, specimens are automatically stored in a biobank and consequently are available for future investigations.

Committees[edit]

In order to control, advise and establish professional structures two committees were formed. Publication issues and sifap basics are the responsibility of the steering committee. The nine members are: Miron Ginsberg (Miami, USA), Michael Hennerici (Mannheim, Germany), Christof Kessler (Greifswald, Germany), Edwin Kolodny (New York, USA), Peter Martus (Berlin, Germany), Bo Norrving (Lund, Sweden), Erich-Bernd Ringelstein (Münster, Germany), Peter Rothwell (Oxford, UK) and Graham Vanables (Sheffield, UK) The biobank committee oversees the administration of stored specimens and decides in formal meetings on proposed new projects. The biobank committee consists of: Natan Bornstein (Tel Aviv, Israel), Peter Paul DeDeyn (Antwerp, Belgium), Martin Dichgans (Munich, Germany), Franz Fazekas (Graz, Austria), Hugh Markus (London, UK), Olaf Rieß (Tübingen, Germany) and Arndt Rolfs (Rostock, Germany).

Participating Centres[edit]

Country City Institution
Belgium Antwerp Middelheim General Hospital
Belgium Leuven UZ Gasthuisburg Hospital
Germany Altenburg Kreiskrankenhaus Altenburg
Germany Bayreuth Klinikum Hohe Warte
Germany Berlin Charité
Germany Berlin Klinikum Neukölln
Germany Bremen Klinikum Bremen Mitte
Germany Celle Allgemeines Krankenhaus Celle
Germany Chemnitz Klinikum Chemnitz
Germany Dresden Universitätsklinikum Carl Gustav Carus
Germany Düsseldorf Heinrich-Heine-Universität
Germany Frankfurt Johann-Wolfgang-Goethe-Universität
Germany Giessen Universität Giessen
Germany Greifswald Ernst-Moritz-Arndt-Universität
Germany Halle/Saale Martin-Luther-Universität
Germany Hamburg Universitätsklinikum Hamburg-Eppendorf
Germany Heidelberg Universität Heidelberg
Germany Jena Universitätsklinikum Jena
Germany Kiel Universitätsklinikum Schleswig-Holstein
Germany Leipzig Universitätsklinikum Leipzig
Germany Marburg Universitätsklinikum Giessen und Marburg
Germany Mühlhausen Ökumenisches Hainich Klinikum
Germany Munich Klinikum München - Großhadern
Germany Münster Universitätsklinikum Münster
Germany Regensburg Universitätsklinikum Regensburg
Germany Rostock Universität Rostock
Germany Tübingen Eberhard-Karls-Universität
Germany Ulm Universität Ulm
France Lyon Hospices Civils de Lyon
Finland Helsinki Helsinki University Central Hospital
Georgia Tbilisi S.Khechinashvili University
Republic of Ireland Dublin The Adelaide and Meath Hospital
Italy Milan Ospedale Maggiore Policlinico
Croatia Zagreb University Hospital "Sestre Milosrdnice"
Malta Msida St. Anne's Clinic
Austria Graz Universitätsklinik für Neurologie
Austria Innsbruck Universitätsklinik für Neurologie
Austria Klagenfurt LKH
Austria Salzburg Christian Doppler Klinik
Austria Vienna Krankenhaus der Barmherzigen Brüder
Austria Linz Wagner-Jauregg Linz
Poland Warsaw Institute of Psychiatry and Neurology
Portugal Lisbon Hospital de Sao José
Spain Madrid Hospital Universitario La Paz
United Kingdom Glasgow University of Glasgow
United Kingdom Oxford University of Oxford

External links[edit]

Literature[edit]

  • Rolfs et al. "Prevalence of Fabry disease in patients with cryptogenic stroke: a prospective study", The Lancet, Vol 366, 2005
  • Spada et al. "High Incidence of Later-Onset Fabry Disease Revealed by Newborn Screening", The American Journal of Human Genetics, Vol 79, 2006

References[edit]

  1. ^ "Stroke In Young Fabry Patients". University of Rostock. 2011. Retrieved 13 August 2011.