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Novel methods for predicting preventing and treating attacks in patients with hereditary angioedema ((PREHEAT))

Objective

Hereditary angioedema (HAE) is a rare, potentially lethal disease caused by the deficiency of Cl inhibitor. It is characterised by recurrent swelling of the skin (causing disfiguration), of the bowel (causing severe abdominal pain), of the upper airways (causing asphyxia). There is very low awareness to this disease; thus a minority of patients reach correct diagnosis and treatment. Small and dispersed case-list and lack of epidemiological data lessen the value of clinical studies and discourage research aimed to develop new therapeutic strategies. We propose the creation of a European research group on HAE composed by scientist, clinicians and associations of patients involved in the field of HAE. The project is aimed to improve the quality of life of HAE patients through:
(i) creation of a European register for HAE;
(ii) improvement of existing therapeutic resources
(iii) identification of new targets for therapy.

Funding Scheme

CON - Coordination of research actions

Coordinator

THE UNIVERSITY OF MILANO
Address
15,Via Pace 15
20122 Milano
Italy

Participants (8)

CENTRE HOSPITALIER UNIVERSITAIRE DE GRENOBLE
France
Address

38043 Grenoble
CLB - SANQUIN BLOOD SUPPLY FOUNDATION
Netherlands
Address
Plesmanlaan 125
1066 CX Amsterdam
HOSPITAL UNIVERSITARIO LA PAZ
Spain
Address
Paseo De La Castellana 261
28046 Madrid
JOHANNES GUTENBERG UNIVERSITAET MAINZ
Germany
Address
Langenbeckstrasse, 1 C/o Prof. Dr. K. Bork
55131 Mains
NORDLAND HOSPITAL
Norway
Address
Prinsens Gate
8092 Bodo
ODENSE UNIVERSITY HOSPITAL
Denmark
Address
Sdr. Boulevard
5000 Odense
SEMMELWEIS UNIVERSITY OF MEDICINE
Hungary
Address
Kutvolgyi Ut 4
1125 Budapest
UNIVERSITY OF ZURICH
Switzerland
Address
Gloriastrasse 31
8091 Zurich