PKD Natural History Study in Europe

PKD Natural History Study from Harvard University also accessible in Europe

The Van Creveldkliniek, centre for benign hematology of the University Medical centre Utrecht, the Netherlands is a highly specialised multidisciplinary treatment centre hemostasis, thrombosis and diseases of the blood (except cancer). One of the goals of this centre is to improve the lives of patients with Pyruvate Kinase Deficiency (PKD).

Creveldkliniek_1

To reach this goal local hematologist Dr Eduard J van Beers participates in the PKD Natural History Study from Harvard University in the USA. A registry study open for all patients in Europe with as purpose to describe the symptoms, treatments, and complications related to the quality of life of patients with PKD.

Patients that want to participate are asked to fill in questionnaires on their quality of live and are asked to give permission to the research team to look through their medical history and recent laboratory results.

Other European Hospitals participating on this study are:

  • Universitätsklikum Heidelberg, Zentrum Für Kinder- un Jugendmedizin Klinik Kinderheilkunde, Heidelberg, Germany
  • Klinikum der Universität München, Center for Pediatric Hematology/HemostaseologyMunich, Germany
  • Fondazione IrCCS Ca’Granda Ospedale Maggiore Policlinico, Milan, Italy

Further studies done in the van Creveldclinic

Patients can also participate in another study by donating a blood sample for research in the laboratory of Dr Richard van Wijk. This research is to further delineate the relation between laboratory results en severity of the low blood count.

To take part at this research or to ask more information about the Harvard study, you can contact the van Creveldclinic:

Ward van Beers, Internist-hematoloog | Divisie Interne Geneeskunde en Dermatologie, Van Creveldkliniek

Universitair Medisch Centrum Utrecht | Kamernummer C.01.412 | Huispostnummer C.01.412 | Postbus 85500 | 3508 GA  UTRECHT T: +31 88 75 584 50 | F: +31 88 75 554 38

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