Lived experience-led research on eating disorders

leading_study

Hi everyone, I'm Dr Kai Thomas, a researcher leading a study at Cardiff University exploring the lived experiences of eating disorders in trans, gender diverse, and neurodivergent people.

We are looking for people who are…

• Aged 18+ years
• Fluent in English and based in the UK,
• And have lived experience of an eating disorder (current or historical)*

*Please note, you do not need to have received a diagnosis or treatment in order to take part.

The study is open to both cisgender and trans and gender diverse people, as well as those who are neurodivergent or neurotypical.

I have provided some further information below and our contact details. Please feel free to reach out to us if you have any questions!

Name of study:

Lived experience of EAting Disorders In Neurodivergent and Gender-diverse people (LEADING) Study

What is the purpose of the research?

We are conducting a research study to understand how eating behaviours and thoughts around body shape and weight are related to gender identity and neurodivergent characteristics in gender diverse, trans and cisgender people who have lived experience of an eating disorder.

Description of research:

Both neurodivergent and gender diverse people are more likely to develop eating disorders compared to neurotypical cisgender individuals. Eating disorders may present differently in neurodivergent and gender diverse people compared to neurotypical cisgender people, which may impact on their experiences of accessing effective support promptly. By raising awareness and understanding of these diverse lived experiences, we aim to improve the recognition of eating disorders and support the development of effective support that is able to meet the unique needs of these groups.

What is the purpose of the research?

We are conducting a research study to understand how eating behaviours and thoughts around body shape and weight are related to gender identity and neurodivergent characteristics in gender diverse, trans and cisgender people who have lived experience of an eating disorder.

What is the method of the research?

Participation in this study will involve completing an online survey, which will include the following:

• A series of online questionnaires to gather information on your behaviours and thoughts around eating and your body.
• Questions about your gender identity, mental health, and neurodivergent characteristics.
• Open ended questions which will allow you to share your experiences of disordered eating and eating disorder services with us.

You will also be asked to provide basic demographic information and indicate whether you have received a diagnosis of an eating disorder, autism, or ADHD.

Completion of this survey should take around 45 mins. 

Who will conduct the research?

The research is organised by Dr Kai Thomas at the School of Psychology in Cardiff University. This research is funded by Health and Care Research Wales (award no. 525831).

What personal data will be collected?

Any personal information you provide (e.g., name, email address) will be kept in a separate password-protected document to your survey responses. If you consent to future contact, your personal information and survey responses will only be linked using an anonymous identification number.

You will have the option to provide your name and email address so we can contact you about the following:

• The prize draw to win one of 10 x £50 LoveToShop vouchers
• Receiving a copy of the results of this research project
• Opportunities to participate in similar research studies

Prize Draw

Once data collection has finished and the vouchers have been sent, records of your email address will be deleted (within 6 months).

If you choose to provide your contact details to receive a copy of the results or hear about research participation opportunities, your details may be held for longer (see below).

Copy of Results and Research Participation Opportunities

Your personal information will be held for a maximum of 5 years. You can withdraw your personal information at any time. All records of personal information will be deleted after 5 years.

How will that personal data be stored and how long for?

Once data collection has finished and the prize draw vouchers have been sent, records of your email address will be deleted (within 6 months).

If you choose to provide your contact details to receive a copy of the results or hear about research participation opportunities, your personal information will be held for a maximum of 5 years. You can withdraw your personal information at any time. All records of personal information will be deleted after 5 years.

How will members participate in the research?

Please use the following link: tinyurl.com/LEADINGStudy1

When will the research end or survey close?

The survey will close at the end of day on 25th July 2025.

Mary_Scope

Oooh this sounds like a really interesting piece of research @leading_study 😄

Albus_Scope

The above post has been moderated and checked by the Scope Community Team

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