Research Project
Volunteers Needed
The clinical validity and acceptability of alternative methods of monitoring for
young people with
Congenital Adrenal Hyperplasia (CAH)
-
Are you 12 years or over?
-
Do you have CAH?
-
Do you see the endocrine team at BARTS, Royal London or UCLH?
Welcome!
Thank you for visiting my website www.joincahresearch.org and for taking an interest in this research project entitled:
"The clinical validity and acceptability of alternative methods of monitoring for young people with Congenital Adrenal Hyperplasia (CAH)."
My name is Kate Davies. I'm an experienced Children's Advanced Nurse Practitioner who has specialised in paediatric endocrinology since 2000.
I'm also an Associate Professor at London South Bank University. I have received international recognition for my work in paediatric endocrinology, particularly in growth, puberty, adrenal disorders, and the late effects of childhood brain tumours. I lead the University's Non Medical Prescribing programme.
I am currently undertaking a PhD in Nursing focused on congenital adrenal hyperplasia (CAH). In this context, we are looking for research study volunteers in London, UK. If you are 12 years and over and have CAH, we'd love to hear from you.
Please click HERE if you wish to contact the researchers for more information about participating in the project.
What attracted me to this research project?
"I was immediately fascinated with adrenal disorders when I first started working in paediatric endocrinology over 25 years ago. I soon began to realise that every patient’s journey with CAH is complex, and in need of specialised nursing input. This involves not just the practicalities, but emphasis on psychosocial support, acting as an advocate for the patient and their families, and providing education across the whole lifespan.
My special interest has resulted in my working with patient support groups, participating in national guideline developments, and speaking around the world on optimum nursing care for babies, children and young people with congenital adrenal hyperplasia. I am passionate that care should be accessible for all, and I am honoured that I can initiate this field of study in my own PhD research." -
Kate Davies
Our Research Focus
Our Research Team is dedicated to exploring alternative and less invasive methods for monitoring cortisol levels for young people with Congenital Adrenal Hyperplasia (CAH).
Our team is committed to conducting research that will make a meaningful impact on the lives of individuals with CAH.
For people with CAH, keeping an eye on hormone levels usually means regular blood tests.
These can sometimes involve hospitalisation or painful cannulisation - a stressful process, especially for young people.
With the help of this research project, we hope to find other clinically valid ways to monitor cortisol levels. In the future, some of these could potentially be done by yourselves at home.
These could involve taking hair or saliva samples instead of blood, and also using some simple body measurements, like height and weight.
Most importantly, we want to know what young people actually think about these new ways of monitoring. Are they preferable? Do they make life easier?
This vital part is often missed in making sure new approaches are not only effective but also meaningful to those living with the condition.