Participants wanted – Exploring support needs of young people with CAH

Jun 30, 2023

Researchers from the Centre for Appearance Research (CAR) at the University of the West of England (UWE), Bristol are working on a project to better understand the support needs of young people with a difference in sex development (dsd) and develop support based on this research.

They would like to include the voices of people with lived experience as much as possible in the design and implementation of the research and so are currently looking for young people with a dsd (aged 16-25 years) as well as parents of individuals with dsds to take part as User Representatives. This is a paid opportunity and would involve completing anonymous online surveys and taking part in online meetings with other User Representatives (separate meetings for parents and young people). These will focus on understanding peoples’ experiences, what kind of support is missing and needed for young people with dsds, and how we should approach the main part of our research (e.g., what questions to ask, where to find participants). 

There will be opportunities throughout the process to talk without the researchers present as well as provide anonymous feedback and suggestions – this is to help make sure User Representatives’ voices are heard and the project is going in the direction they feel is right. The meetings will be flexible to respect school, work, and social commitments, and would be a time commitment of no more than 5 hours total.   

The researchers are prioritising creating a space where everyone feels comfortable to provide honest input and feedback and welcome any young people or parents who are interested in the project. 

See the flier below, which includes contact details of the researchers if you’re interested in taking part.

REMINDER: The Living with CAH Support Group and UWE Bristol are not the same organisation. Please take this into consideration. We (the Living with CAH Support Group) are not responsible for anything that you share with UWE Bristol. See Section 10 of our Privacy Policy here.

Recent Blog Posts

Patient Survey: Improving the Delivery of Genetic Results

Patient Survey: Improving the Delivery of Genetic Results

CAH is a rare genetic condition and many of us will have received results of genetic testing at some point on our CAH journey.  When you received these reults might not have been at the best time - pehaps you received genomic test results while you were driving, on...

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Join the NHS South East Genomic Medicine Service and Unique on Wednesday 16th September 2026 at 12-1pm on Teams to celebrate the launch of “Finding Your Way: A Parent's Guide to Rare Disease”. Written by parents, for parents, this new guide offers practical support,...

New report highlights access gap for innovative medicines

New report highlights access gap for innovative medicines

The CAH Support Group recently provided input into a new Medicines Australia report about access to innovative medicines in Australia. The report, now published, warns that Australian patients are missing access to some innovative medicines available in comparable...

The CAH Support Group is affiliated with Society for Endocrinology, an organisation that supports clinicians, scientists and nurses who work with hormones throughout their careers. They engage policy-makers, journalists, patients and the public with hormone science to encourage informed health decisions, and to demonstrate the value of endocrinology to the wider world and also maintains a public information website, You and Your Hormones.

All content on this website (livingwithcah.com) is copyright the CAH Support Group unless otherwise stated.

The CAH Support Group cannot be held responsible for the content provided by any external links unless stated.

Cookie Policy | Privacy Policy | Disclaimer | Forum & Social Media Rules | Contact Us