Research opportunities for people affected by hepatic GSDs.

Loughborough University survey

My name is Adam Potter and I’m a PhD student at Loughborough University, UK. Our team at Loughborough, supported by the Association for Glycogen Storage Disease UK, are running a survey for adults and adolescents (12-17 years) with hepatic GSDs, and carers of children and adolescents with hepatic GSDs (types 0, 1a, 1b, 3a, 3b, 3c, 3d, 6, 9a/PHKA2, 9b/PHKB and 9c/PHKG2).

The purpose of the survey is to explore the mental, social and physical wellbeing of people with hepatic GSDs and their carers. We hope to learn about how hepatic GSDs impact those living with them and their carers, and identify areas where there could be more support. This survey is building on the results of an earlier interview study. We hope to expand on those findings by giving more people the chance to take part and hope to reach people from all over the world.

The survey will take around 15-25 minutes to complete, and will ask about mental health, social wellbeing and physical health. There will also be a follow up survey (5-10 minutes) one month later, and a second follow up survey one year later (15-25 minutes).

Adult participants that complete all three surveys will be entered into a prize draw for one of three £50 vouchers.

If you are interested in taking part, and/or you are a carer of an adolescent with a hepatic GSD that might like to take part, please access the survey below.

If you are an adolescent (aged 12-17) with a hepatic GSD and would like to take part, please share the link below with your parents/caregivers. They will then be sent the adolescent version of the survey for you to complete. Please do not complete the survey below, as the adolescent version has slightly different questions.

If you would like to know more about the study, please don’t hesitate to contact myself at a.potter@lboro.ac.uk or Dr Flo Kinnafick at f.e.kinnafick@lboro.ac.uk

The survey can be accessed at:

Hepatic GSD Wellbeing survey