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SWEDISH NATIONAL REGISTRY FOR BLEEDING DISORDERS – A SECOND REPORT

Conference paper
Authors Margareta Holmström
Jan Astermark
Fariba Baghaei
Elisabeth Brodin
Nadine Gretenkort-Andersson
Malin Axelsson
Anna Olsson
Linda Myrin-Westesson
Gunilla Jacobsson-Ekman
Linda Myrin-Westesson
Elsa Olsson
Pia Petrini
Published in EAHAD 2019
Publication year 2019
Published at Institute of Neuroscience and Physiology, Department of Clinical Neuroscience
Institute of Medicine
Institute of Health and Care Sciences
Language en
Keywords hemofili, registeruppföljning
Subject categories Hematology

Abstract

Introduction: Hemophilia Care in Sweden is centralized to three different and certified European Hemophilia Care Centers (EHCCs) (Stockholm, Gothenburg and Malmö[f1]). A recent web- based National registry has been set up for patients with bleeding disorders in Sweden. The registry is mainly funded by Swedish authorities. Methods: A multi- professional steering committee is running the registry with representatives from all three centers including physicians, nurses, physiotherapist and also a patient representative. A web- based platform, Real- Q, is used for the registry. Results: By the 31st Dec 2017, a total number of 1030 patients with bleeding disorders were included in the registry, mainly patients with hemophilia A, B and Von Willebrand disease. Data regarding bleedings, treatment modality and type of product, inhibitor status, viral infections are collected. Likewise patient reported outcome measurements (PROM)- such as pain and quality of life[.The number of patients with hemophilia A, B and Von Willebrand disease in 2016 resp 2017 were as follows:Hemophilia A; n = 243 in 2016 and n= 691 in 2017.Hemophilia B: n = 49 in 2016 and n = 191 in 2017.Von Willebrand disease: n = 11 in 2016 and n = 152 in 2017.[LMW1] are registered.[LMW2] are registered on a regular basis? Discussion/Conclusion: The number of patients in the Swedish National Registry for bleeding disorders has increased significantly during the last year; from a total of 308 Dec 31st 2016 to 1030 in Dec 31st 2017. Increasing amount of data will enable further evaluation of treatment data and also joint status, quality of life and bleeding reports.

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