ESE would like to announce our involvement with a new 2-year project led by Dr Sofia Llahana aiming to evaluate factors that influence self-management for patients with Adrenal Insufficiency (AI), and to develop an ESE Position Statement on “Self-management and support services for patients with Adrenal Insufficiency” under the auspices of the ESE Rare Diseases Committee and Endo-ERN.
This evidence-based ESE Position Statement will be informed by a mixed-methods research study conducted in two phases:
- International Survey: adapted and translated for each country, involving adult patients with adrenal insufficiency.
- Delphi Study: To develop and test the statements for the European Position Statement.
We invite you to participate as a member of the Expert Panel comprising of endocrinology clinicians and patient advocacy group representatives. Please note that this study focuses on Adult Patients with Adrenal Insufficiency, though we plan to expand this to the Pediatric population at a later stage.
Please see the attached flyer for additional details, and contact sofia.llahana@city.ac.uk if you are interested in getting involved in this project. Please also disseminate this initiative to your wider networks. The protocol of the larger ongoing study aiming to develop a self-management intervention for patients with adrenal insufficiency can be accessed via this publication.
