Project: SHAERPA

Stopping androgen treatment in patients with HAE - characterization of reasons and protocols and development of advice for patients and physicians

This international, multi-center, prospective and partly retrospective, observational, cross-sectional academic study aims to develop guidance on how to discontinue androgen treatment based on patient data. We hope this project will spread globally and to help improve patient care.

SHEAERPA is a project of the GA2LEN HAEi network of Angioedema Centers of Reference and Excellence (ACARE). The ACARE network encourages all of its member physicians as well as non-ACARE physicians who treat patients with HAE to participate in this project.

Study type:

  • Questionnaire (physician and patient)

Aims:
To determine why, how, and with what consequences androgen treatment is stopped in patients with hereditary angioedema (HAE).

 

  1. To characterize the reasons why patients with HAE discontinue the use of androgens for long term prophylaxis.
  2. To determine which protocols are applied for stopping the use of androgens.
  3. To investigate the consequences of androgen discontinuation and the impact of protocols applied
  4. To generate, based on the data obtain, recommendations that help to advise physicians on how to discontinue the use of androgens in their patients with HAE.

Project lead:
Carolina Vera, Marcus Maurer, Markus Magerl

Steering Committee:

Emel Aygören (Germany, Frankfurt, University Hospital Frankfurt)

Isabel Boccon-Gibod (France, Grenoble, CHU Grenoble)
Sorena Kiani (UK, London, Barts Health NHS Trust)

David Launay (France, Lille, University Hospital Lille)

Markus Magerl (Germany, Berlin, Charité)

Marcus Maurer (Germany, Berlin, Charité)

Henriette Farkas (Hungary, Budapest, Semmelweis University Hospital)

Management Committee:

Sebastien Sanges (France, Lille, University Hospital Lille)

Shimalee Andarawewa (Germany, Frankfurt, University Hospital Frankfurt)

Lorena Lorenzo (UK, London, Barts Health NHS Trust)

Szuszanna Balla (Hungary, Budapest, Semmelweis University Hospital)

Carolina Vera (Germany, Berlin, Charité)

Status:
in development

Deadline:
we will be recruiting for 2 years.

Coauthorship:

  • tbd

For more information please contact: carolina.vera@charite.de