CAH patient’s survey from CAH International
Last year, CAH International held a first joint kick-off, on the basis of which working groups for research, surgery and standard of care were also formed.
The Standard of Care Working Group are mainly concerned with the issue of care at the moment. In order to learn more about the care in the different countries and to define their focus within the working group, they have developed a survey for CAH patients.
“The main goal of the survey is to identify the lifestyle of patients and caregivers living with CAH worldwide. The results of the survey will be elaborated and further discussed in a dedicated workshop to plan further actions to address unmet needs and to share good practices.”
The survey can be found here. Please complete the survey by 15th July 2023.
The surveys are treated anonymously. For any questions, please contact manuela.broesamle@outlook.de
REMINDER: The Living with CAH Support Group and CAH International are not the same organisation. Please take this into consideration when completing their survey. We (the Living with CAH Support Group) are not responsible for any data that you share with CAH International. See Section 10 of our Privacy Policy here.
Recent Blog Posts
What you should know about COVID-19 – updated 10th August 2021
Guidance from other organizations is continually being issued and we'll do our best to link to them below - please keep checking back here for more updates. UPDATE 10th August 2021 Article: “ChAdOx1 SARS‐CoV‐2 vaccination: A putative precipitant of adrenal crises”...
New NICE Guidelines – identification and management of adrenal insufficiency
The publication of new NICE (National Institute for Health and Care Excellence) guidelines - "Adrenal insufficiency: identification and management" marks a significant advancement in the management and treatment of primary, secondary and tertiary adrenal...
Survey: Paediatric Adrenal Insufficiency Education
This project, led by Edge Hill University is working with NHS clinicians to develop national education standards and resources for sick day/emergency management of adrenal insufficiency in children and young people. The project would like to hear the views of parents...
Treatment Research Update – Crinetics Atumelnant (CRN04894)
Atumelnant (CRN04894) is in development by Crinetics for the treatment of congenital adrenal hyperplasia (CAH) and ACTH-dependent Cushing's syndrome. It is an oral, selective ACTH antagonist. Atumelnant is now in Phase 2 of development and you can read the latest...