Search: onr:"swepub:oai:gup.ub.gu.se/286749" >
SWEDISH NATIONAL RE...
SWEDISH NATIONAL REGISTRY FOR BLEEDING DISORDERS – A SECOND REPORT
-
Holmström, Margareta (author)
-
Astermark, Jan (author)
-
- Baghaei, Fariba, 1964 (author)
- Gothenburg University,Göteborgs universitet,Institutionen för medicin,Institute of Medicine
-
show more...
-
- Brodin, Elisabeth (author)
- Gothenburg University,Göteborgs universitet,Institutionen för neurovetenskap och fysiologi, sektionen för klinisk neurovetenskap,Institute of Neuroscience and Physiology, Department of Clinical Neuroscience
-
Gretenkort-Andersson, Nadine (author)
-
Axelsson, Malin (author)
-
- Olsson, Anna (author)
- Gothenburg University,Göteborgs universitet,Institutionen för medicin,Institute of Medicine
-
- Myrin-Westesson, Linda (author)
- Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences
-
Jacobsson-Ekman, Gunilla (author)
-
Myrin-Westesson, Linda (author)
-
Olsson, Elsa (author)
-
Petrini, Pia (author)
-
show less...
-
(creator_code:org_t)
- 2019
- 2019
- English.
-
In: EAHAD 2019.
- Related links:
-
https://gup.ub.gu.se...
Abstract
Subject headings
Close
- 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.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Hematologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Hematology (hsv//eng)
Keyword
- hemofili
- registeruppföljning
Publication and Content Type
- ref (subject category)
- kon (subject category)
To the university's database
- By the author/editor
-
Holmström, Marga ...
-
Astermark, Jan
-
Baghaei, Fariba, ...
-
Brodin, Elisabet ...
-
Gretenkort-Ander ...
-
Axelsson, Malin
-
show more...
-
Olsson, Anna
-
Myrin-Westesson, ...
-
Jacobsson-Ekman, ...
-
Olsson, Elsa
-
Petrini, Pia
-
show less...
- About the subject
-
- MEDICAL AND HEALTH SCIENCES
-
MEDICAL AND HEAL ...
-
and Clinical Medicin ...
-
and Hematology
- Articles in the publication
- EAHAD 2019
- By the university
-
University of Gothenburg