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