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The establishment and utility of Sweha-Reg: a Swedish population-based registry to understand hereditary angioedema

Mallbris, L; Nordenfelt, P; Bjorkander, J; Lindfors, A; Werner, Sonja LU and Wahlgren, CF (2007) In BMC Dermatology 7(1).
Abstract
ABSTRACT: BACKGROUND: The importance of acquiring comprehensive epidemiological and clinical data on hereditary angioedema has increasingly caught the attention of physicians and scientists around the world. The development of networks and creation of comprehensive policies to improve care of people suffering from rare diseases, such as hereditary angioedema, is a stated top priority of the European Union. Hereditary angioedema is a rare disease, that it may be life-threatening. Although the exact prevalence is unknown, current estimates suggest that it is 1/10.000-1/50.000 individuals. The low prevalence requires combined efforts to gain accurate epidemiological data on the disease and so give us tools to reduce morbidity and mortality,... (More)
ABSTRACT: BACKGROUND: The importance of acquiring comprehensive epidemiological and clinical data on hereditary angioedema has increasingly caught the attention of physicians and scientists around the world. The development of networks and creation of comprehensive policies to improve care of people suffering from rare diseases, such as hereditary angioedema, is a stated top priority of the European Union. Hereditary angioedema is a rare disease, that it may be life-threatening. Although the exact prevalence is unknown, current estimates suggest that it is 1/10.000-1/50.000 individuals. The low prevalence requires combined efforts to gain accurate epidemiological data on the disease and so give us tools to reduce morbidity and mortality, and improve quality of life of sufferers. METHODS: Sweha-Reg is a population-based registry of hereditary angioedema in Sweden with the objectives of providing epidemiological data, and so creates a framework for the study of this disease. The registry contains individual-based data on diagnoses, treatments and outcomes. CONCLUSIONS: The present manuscript seeks to raise awareness of the existence of Sweha-Reg to stimulate the international collaboration of registries. A synthesis of data from similar registries across several countries is required to approach an inclusive course understanding of HAE. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
BMC Dermatology
volume
7
issue
1
publisher
BioMed Central
external identifiers
  • pmid:18053127
  • scopus:37549034184
ISSN
1471-5945
DOI
10.1186/1471-5945-7-6
language
English
LU publication?
yes
id
385ec371-1955-486b-a791-d0d17e720849 (old id 1142684)
date added to LUP
2008-08-01 12:18:51
date last changed
2017-10-01 04:45:14
@article{385ec371-1955-486b-a791-d0d17e720849,
  abstract     = {ABSTRACT: BACKGROUND: The importance of acquiring comprehensive epidemiological and clinical data on hereditary angioedema has increasingly caught the attention of physicians and scientists around the world. The development of networks and creation of comprehensive policies to improve care of people suffering from rare diseases, such as hereditary angioedema, is a stated top priority of the European Union. Hereditary angioedema is a rare disease, that it may be life-threatening. Although the exact prevalence is unknown, current estimates suggest that it is 1/10.000-1/50.000 individuals. The low prevalence requires combined efforts to gain accurate epidemiological data on the disease and so give us tools to reduce morbidity and mortality, and improve quality of life of sufferers. METHODS: Sweha-Reg is a population-based registry of hereditary angioedema in Sweden with the objectives of providing epidemiological data, and so creates a framework for the study of this disease. The registry contains individual-based data on diagnoses, treatments and outcomes. CONCLUSIONS: The present manuscript seeks to raise awareness of the existence of Sweha-Reg to stimulate the international collaboration of registries. A synthesis of data from similar registries across several countries is required to approach an inclusive course understanding of HAE.},
  articleno    = {6},
  author       = {Mallbris, L and Nordenfelt, P and Bjorkander, J and Lindfors, A and Werner, Sonja and Wahlgren, CF},
  issn         = {1471-5945},
  language     = {eng},
  number       = {1},
  publisher    = {BioMed Central},
  series       = {BMC Dermatology},
  title        = {The establishment and utility of Sweha-Reg: a Swedish population-based registry to understand hereditary angioedema},
  url          = {http://dx.doi.org/10.1186/1471-5945-7-6},
  volume       = {7},
  year         = {2007},
}