Sifap

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

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

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
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

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
CountryCityInstitution
BelgiumAntwerpMiddelheim General Hospital
BelgiumLeuvenUZ Gasthuisburg Hospital
GermanyAltenburgKreiskrankenhaus Altenburg
GermanyBayreuthKlinikum Hohe Warte
GermanyBerlinCharité
GermanyBerlinKlinikum Neukölln
GermanyBremenKlinikum Bremen Mitte
GermanyCelleAllgemeines Krankenhaus Celle
GermanyChemnitzKlinikum Chemnitz
GermanyDresdenUniversitätsklinikum Carl Gustav Carus
GermanyDüsseldorfHeinrich-Heine-Universität
GermanyFrankfurtJohann-Wolfgang-Goethe-Universität
GermanyGiessenUniversität Giessen
GermanyGreifswaldErnst-Moritz-Arndt-Universität
GermanyHalle/SaaleMartin-Luther-Universität
GermanyHamburgUniversitätsklinikum Hamburg-Eppendorf
GermanyHeidelbergUniversität Heidelberg
GermanyJenaUniversitätsklinikum Jena
GermanyKielUniversitätsklinikum Schleswig-Holstein
GermanyLeipzigUniversitätsklinikum Leipzig
GermanyMarburgUniversitätsklinikum Giessen und Marburg
GermanyMühlhausenÖkumenisches Hainich Klinikum
GermanyMunichKlinikum München - Großhadern
GermanyMünsterUniversitätsklinikum Münster
GermanyRegensburgUniversitätsklinikum Regensburg
GermanyRostockUniversität Rostock
GermanyTübingenEberhard-Karls-Universität
GermanyUlmUniversität Ulm
FranceLyonHospices Civils de Lyon
FinlandHelsinkiHelsinki University Central Hospital
GeorgiaTbilisiS.Khechinashvili University
Republic of IrelandDublinThe Adelaide and Meath Hospital
ItalyMilanOspedale Maggiore Policlinico
CroatiaZagrebUniversity Hospital "Sestre Milosrdnice"
MaltaMsidaSt. Anne's Clinic
AustriaGrazUniversitätsklinik für Neurologie
AustriaInnsbruckUniversitätsklinik für Neurologie
AustriaKlagenfurtLKH
AustriaSalzburgChristian Doppler Klinik
AustriaViennaKrankenhaus der Barmherzigen Brüder
AustriaLinzWagner-Jauregg Linz
PolandWarsawInstitute of Psychiatry and Neurology
PortugalLisbonHospital de Sao José
SpainMadridHospital Universitario La Paz
United KingdomGlasgowUniversity of Glasgow
United KingdomOxfordUniversity of Oxford

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