STudy of Experiences of Eating behaviour in Rare genetic conditions
Research type
Research Study
Full title
STudy of Experiences of Eating behaviour in Rare genetic conditions (STEER)
IRAS ID
300815
Contact name
Samuel Chawner
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Eating disorders have a serious impact on an individual’s wellbeing and physical health. Individuals with eating disorders are up to 6 times more likely of dying prematurely, compared to healthy adults with no eating disorders. It is therefore crucial that we better understand the reasons why young people develop eating disorders. However, it is difficult to study the early signs of eating disorders because teenagers only see a doctor when they are already seriously ill. We need research into child development to identify early signs of eating disorders and to understand how eating disorders develop.
Early research findings indicate that individuals with certain rare genetic conditions are highly vulnerable to childhood eating difficulties and eating disorders. For example, individuals with 16p11.2 deletion syndrome are at high risk of obesity and emotionally over-eat, whereas patients with 16p11.2 duplication syndrome tend to be very underweight, and they have been found to feel full too soon when they are eating.
Although we know that there are eating abnormalities individuals with rare genetic conditions, we do not yet understand the full nature of these problems, how they develop, and whether these are like eating problems seen in individuals with eating disorders who do not have a rare genetic condition. To answer this, I will carry out in-depth eating disorders interviews with child and adults with rare genetic conditions, to identify early signs of eating disorders and how clinical presentation differs by age.
This work will not only provide important information for families affected by rare genetic conditions, but will lead to greater understanding of the causes and early signs of eating disorders more widely.
REC name
Wales REC 4
REC reference
21/WA/0337
Date of REC Opinion
8 Nov 2021
REC opinion
Unfavourable Opinion