UK Research study for adults living with Pompe disease

UK Research study for adults living with Pompe disease

Posted On: 09/02/2022

Barriers and facilitators to Physical Activity and exercise in Late Onset Pompe Disease (LOPD)
A qualitative study by Nicola Condon exploring patient perspectives and experiences.

Nicola Condon

Nicola Condon is well known to the UK Pompe community as a physiotherapist based at the Queen Elizabeth Hospital Birmingham. As a Master’s Student studying Clinical Health Research at the University of Birmingham, she is conducting a research study to explore physical activity and exercise in people living with Pompe disease.

About the study:
The purpose of this research study is to explore the perspectives and experiences of people with Pompe Disease when engaging in physical activity and exercise. To do this I am interviewing people with Pompe disease who are happy to talk about their experiences with exercise before and after their diagnosis and any challenges encountered when incorporating physical activity and/or exercise into your lives.

What does the study involve?:
The study will involve an interview, which will likely take no longer than an hour. It can be completed over the phone or on-line Zoom video call, whichever is easiest for you.

Who can take part?:
Participants should be aged 18 years or over, a UK resident, and have been diagnosed with Pompe Disease.

Nicola is interested in hearing your views and experiences, and keen to hear from all perspectives:

  • Whatever your age or physical limitations
  • Whether you see yourself as generally physically active or not
  • Your experiences with exercise – good or bad / past and present
  • If you wish to be more active what are the major barriers or possible solutions
  • How important physical activity is to you as part of managing your condition
  • How the national pandemic has impacted on physical activity

Consent to participate and Participant Information Leaflet:
If you are interested in taking part in this study further information can be found on THIS LINK

Participants will provide electronic consent after reading the Participant Information Leaflet embedded in the survey.

Study Timeline:
Recruitment period = February 2022 - March 2022.

Ethical Approval:
The study has been approved by the University of Birmingham’s Science, Technology, Engineering and Mathematics Ethical Review Committee

Plans for publication of results/findings:
We plan to present the findings of the study in national and international conferences and to publish them in a reputable peer-reviewed journal.

Contact and Further information:
If you want any further information about this study, please contact
Nicola Condon via e-mail