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 checklist (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 CentoCard explained.pptx) to get the patient examined for potential gene mutations in cooperation with CENTOGENE AG. An estimated evaluation is 30 minutes per patient. Please see the IMAGINE project plan for further details. The ethical approval is available from Charité Universitätsmedizin Berlin (EA1/161/20, April 15th 2021). You will find all project documents in the IMAGINE file list.

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 A_IMAGINE_EK-Antrag_v3.0_final-clean_20210331 can be used for translation).
    2. Translate documents 1-3 (patient consent, patient information and patient questionnaire).
      Translations into Spanish, Portuguese and German are already available (see file list). Translation of the documents 4-5 (physician checklist and documentation sheet) is optional. 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.
      Thomas will inform you about the results as soon they are available (approximately 4-6 weeks).

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 (thomas.buttgereit@charite.de) in case of any questions.

We are looking forward to working with you and are thanking you in advance.

With the kindest regards from the IMAGINE steering committee:

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