October 19, 2009
European PKU survey results published!
Dear colleagues,
On behalf of my colleagues from the PKU Scientific Advisory Board, I would like to sincerely thank you for your participation in the European PKU Survey in 2008.
The survey results were written up in a manuscript tilted "Management of Phenylketonuria in Europe: Survey Results from 19 Countries". The results showed that there is a great amount of variability between different European countries regarding the definition of PKU phenotypes and treatment and follow-up practices for PKU.
I am pleased to announce that the manuscript was accepted for publication by Molecular Genetics and Metabolism in September, 2009. All centers that returned completed questionnaires were listed as contributing European PKU centers.
Please follow the web link below to access the manuscript:
Management of phenylketonuria in Europe: Survey results from 19 countries
In Press, Corrected proofs, Available online 13 September 2009
Nenad Blau, Amaya Bélanger-Quintana, Mübeccel Demirkol, François Feillet, Marcello Giovannini, Anita MacDonald, Friedrich K. Trefz, Francjan van Spronsen
Thank you very much for supporting our efforts to gather more insights into the management of PKU in Europe!
Yours sincerely,
Prof. Nenad Blau on behalf of the PKU Scientific Advisory Board*
*Dr. Amaya Bélanger-Quintana, Unidad Enfermendades Metabolices Servicio de Pediatria Hospital Ramon y Cajal, Madrid, Spain
Prof. Mübeccel Demirkol, Istanbul University Istanbul Faculty of Medicine, Children‘s Hospital, Istanbul, Turkey
Dr. François Feillet, Centre de Référence des Maladies Héréditaires du Métabolisme, INSERM U954, Hôpital d'Enfants, Nancy, France
Prof. Marcello Giovannini, Clinica Pediatrica, Ospedale San Paolo, Universitá degli Studi di Milano, Milan, Italy
Dr. Anita MacDonald, The Children’s Hospital, Birmingham, UK
Prof. Friedrich K Trefz, Klinik für Kinder und Jugendmedizin, School of Medicine University of Tübingen, Reutlingen, Germany
Dr. Francjan van Spronsen, Beatrix Children’s Hospital, University Medical Center of Groningen, Groningen, The Netherlands
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