WG-4 “Experiences and Perceptions of Research”

Chair:Prof. Faisal Ahmed (UK)
Co-Chair:Dr Arianne Dessens (NL)


The Working Group 4 aims at exploring the currently used models of clinical care through the integration of experts in bioethics and gender studies together with DSD advocacy groups. Specifically it will:

  • Explore models of clinical care and communication that facilitate good clinical practice and research and integrate them into clinical guidelines.
  • Formulate needs for patient-orientated research and future clinical trials
  • Explore patient-acceptability of research tools (e.g. examination, questionnaires, databases, genetics, biobanks, imaging) necessary for assessing outcome. This report will be published and made available on the Action website.
  • Integrate experts from bioethics and gender theory to incorporate concepts of sex and gender in biomedical research with recommendations and reports for professionals and policy makers.
  • Interact with other WGs for the preparation of management guidelines and patient-orientated considerations.
  • Support an umbrella advocacy group for people with DSD