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Condition update published on

Study to create a physical activity intervention for adults with Fabry disease

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As part of a research study being funded by the MPS Society, Sarah Gosling (Doctoral Researcher at Brunel University London) is looking for participants to take part in a study to co-design a physical activity intervention to improve mental health and quality of life for adults with Fabry disease.

Who is it for?

Sarah is looking for two groups of people:

Group 1: individuals who have been diagnosed with Fabry disease, are aged 18 years or older, and able to walk without help from another person.

The study will involve you taking part in 2 focus groups which will last approximately 2 hours (first focus group) and 1 hour (second focus group).

Group 2: individuals aged 18 years or older who have been involved in supporting adults with Fabry disease, such as a family member, friend, member of staff or volunteer at the MPS Society.

The study will involve you taking part in 1 focus group which will last approximately 1.5 hours.

What is involved?

The focus groups will take place online and will be with other adults with Fabry disease (for Group 1) or other adults who have supported individuals with Fabry disease (for Group 2). Sarah will arrange a mutually convenient time for the focus groups to take place. The discussions in the focus groups will be around your knowledge and personal experiences of physical activity or your experiences of how to help adults with Fabry disease be more physically active.

Once the focus groups are complete, there will also be an opportunity for individuals in group 1 to take part in a workshop to test out some parts of the intervention, which will last approximately 2 hours.

All individuals will receive a £20 shopping gift voucher as a token of appreciation for their involvement in the study.

How do I join?

If you are interested in taking part, or have any questions about the study, please contact Sarah.


Want to know more?

Read the leaflets produced by Sarah and her team to find out more about the study, eligibility requirements and why this study is important.

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