The establishment and utility of Sweha-Reg: a Swedish population-based registry to understand hereditary angioedema.
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 1/10,000-1/150,000 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.
Mallbris
Lotus
L
Department of Medicine, Unit of Dermatology, Karolinska University Hospital Solna, Karolinska Institutet, Stockholm, Sweden. lotus.mallbris@ki.se
Nordenfelt
Patrik
P
Björkander
Janne
J
Lindfors
Anders
A
Werner
Sonja
S
Wahlgren
Carl-Fredrik
CF
D054179:Angioedemas, Hereditary / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D003219:Confidentiality; D006801:Humans; D007407:Interviews as Topic; D008499:Medical Records; D010358:Patient Participation; D018579:Patient Selection; D012042:Registries; D011795:Surveys and Questionnaires; D013548:Sweden