Background
This research study is about eating behaviours in people living with hypothalamic hunger, also known as acquired hypothalamic obesity (aHO). This is when the part of the brain that regulates appetite and energy balance — the hypothalamus — is damaged, often by a tumour such as craniopharyngioma (CP), pituitary adenoma, hypothalamic glioma or other optic pathway tumours or by the tumour’s treatment (surgery or radiotherapy). This damage disrupts signalling for hunger and feeling full, leading to rapid, extreme weight gain that is difficult to manage.
The study involves completing a short online questionnaire (about 20–30 minutes) with an optional follow-up interview
This study is being led by ELC (Eric Low Consulting). They are a company that specialises in getting the patient’s perspective on rare and complex conditions. The same clinical and patient partners who support people with acquired hypothalamic obesity (aHO) have helped review the questions and study protocol. Rhythm Pharmaceuticals is funding this research to collect data on hyperphagia in the UK, but will not be involved in the data collection or analysis.
Aims of the research
This research aims to
- learn more about hyperphagia (overeating and/or feeling hungry much of the time) in people with hypothalamic hunger.
- understand how common different levels of hyperphagia are in the UK.
Who can take part in this study?
You can take part in this study if:
- You are 18 or older, and you have been diagnosed with acquired hypothalamic obesity, also known as hypothalamic hunger (for example, after craniopharyngioma (CP), pituitary adenoma, hypothalamic glioma or other optic pathway tumours or by the tumour’s treatment (surgery or radiotherapy) or another cause of hypothalamic damage).
OR
- You are completing on behalf of a child with acquired hypothalamic obesity, also known as hypothalamic hunger, between 4 and 17 years old. For children aged 13–17 years, we will request confirmation that the young person is aware of and agrees to their parent or carer sharing information about them as part of the study.
AND
- You live in the UK.
- You can complete a survey about your eating behaviours, or you have a family member, caregiver, or other adult in your home who can help you fill it out.
What does taking part in this research involve?
There are two parts to the study:
Part 1: The Survey
You (or your parent/caregiver, if you are under 18) will answer 14 questions about eating behaviours and experiences of hunger. It is expected to take less than 30 minutes. You can answer the survey online or by post.
There are four additional questions at the end – these are completely optional.
Part 2: A Short Interview (Optional)
We will then interview up to 15 people who have completed the survey to give us additional information about you or your child’s eating behaviours and how they affect everyday life. This is completely optional, but if you would like to complete the interview, please indicate your interest in the final question of the survey.
The interview will take no longer than 45 minutes. Interviews will be conducted on Zoom or by telephone. Your interview will be audio-recorded. Only the researchers will have access to the recording. It will be deleted after the study is complete. For interviews conducted via Zoom, you may choose to keep your camera switched off.
Who can I contact if I have questions?
Elise Gamertsfelder (Study Coordinator): [email protected]
Dr Sadaf Farooqi (Chief Investigator): [email protected]
