Project: IMAGINE (Members)

ACARE Project IMAGINE

Dear ACARE members,

We kindly invite you to join the ACARE project called IMAGINE (Identification of mutations in genes of patients with idiopathic and hereditary angioedema

This international, multi-center, prospective cross-sectional academic study aims to identify genetic mutations and biomarkers in clinically well characterized patients with recurrent idiopathic angioedema in order to gain more insights into the pathomechanisms and genetic drivers of rare forms of angioedema

IMAGINE consists of a physician documentation sheet (including medical history, lab values and information about response to prior treatment if available) and a patient questionnaire. In addition, a few drops of EDTA-blood from each patient are dropped onto a dry blood spot (DBS) card (see attached file CentoCard explained.pptx) and examined for gene mutations in cooperation with CENTOGENE AG (see attached files for further information). An estimated evaluation is 30 minutes per patient. Please see enclosed documents, and especially the project plan, for further details.

The ethical approval is available from Charité Universitätsmedizin Berlin (EA1/161/20, April 15th 2021).

Do you have patients with idiopathic recurrent angioedema and would you like to participate? Please follow these steps:

  1. Obtain your local ethics committee approval (document 7 can be used for translation).
  2.  Translate documents 2, 3, and 4 (physician documentation sheet, patient questionnaire, patient information form, informed consent form). If there are more ACAREs in your country, the same translated documents can be used by all centers. We encourage you to send translated documents to the ACARE Office. They are going to be made safely available in the password-protected area of the ACARE webpage.
  3.  Ask at ACARE office or via thomas.buttgereit@charite.de to send over CENTOGENE DBS cards for your patients and indicate how many you will need.
  4.  Please fill in the information in questionnaires and send them together with the CENTOGENE DBS cards back to Dr. med. Thomas Buttgereit, Chariteplatz 1, 10117 Berlin

We intend to present study results at an international congress (preferably EADV or EAACI) and publish them in peer-reviewed scientific journals. To become a coauthor, you need to include at least 20 patients and contribute to interpretation of study results and manuscript development.

Additional co-authorship criteria are: 40 included patients more = another additional co-authorship, 80 included patients more = another additional co-authorship. The sequence of coauthors who contributed equally to data interpretation and manuscript development will be based on the number of patients included.

    The study is going to be open until September 2023. Please do not hesitate to contact us (mojca.bizjak(at)klinika-golnik.si, dorothea.terhorst(at)charite.de) in case of any questions. We are looking forward to working with you and are thanking you in advance.

    With our kindest regards,

    Thomas Buttgereit and Markus Magerl (project leaders)
    Marcus Maurer
    Aslı Gelincik
    Kiran Godse
    Yuxiang Zhi
    Marc Riedl
    Anete Grumbach
    Margarida Gonçalo