Patient information
Studies of autoimmun polyendokrinopati – candidiasis –ektodermal dystrophy (APECED) in Europe by the EurAPS study group
Last updated 2006-10-14
A European concortium funded by EU’s 6th framework program has been established to increase knowledge on APECED in particular, and autoimmune diseases in general.
Specifically, we aim to create a European patient registry and biobank in order to describe the clinical manifestations of APECED in detail and to study the natural cause of the disease. Blood samples will be used to investigate the immunological and genetic processes involved in the development of APECED. In particular, we will assay an array of autoantibodies and perform DNA-analysis of the autoimmune regulator (AIRE) gene, which is mutated in this disease.
Participation in the study is voluntary and will not affect your treatment. Participation in the study implies filling in a registration form and giving a blood sample. We may also need to take part in information from the patient records kept by your doctor. All the information we obtain will be treated with the outmost confidentiality, and no one outside the study group will have access to the information.
Publication of the results will be done in such a way that individuals can not be identified. The physician responsible for your treatment will be informed about the results. The new knowledge we hope to obtain will help as to understand, evaluate and treat APECED better than we do today, and help us understand other autoimmune diseases as well.
For the EurAPS study group,
Eystein S. Husebye
Professor
Department of Medicine
Haukeland University Hospital
N-5021 Bergen
Norway
Eystein.husebye@med.uib.no; phone,
+47-55973078; fax +47-55972950