Invitation to UK patients to participate in research into patients' and families' experience of living with Pompe disease

Invitation to UK patients to participate in research into patients' and families' experience of living with Pompe disease

Posted On: 03/06/2021 Recently Posted!

An invitation for people in the UK living with Pompe disease to help with research which will explore the effects of Pompe disease on families.

Pompe Support Network is keen to support research in many different aspects to improve the treatments and quality of life of individuals within the Pompe community. Below is an invitation from Cobalt Research, one of our partner companies, that we would encourage members of the UK Pompe community to consider.



Invitation to UK patients to participate in research into patients' and families' experience of living with Pompe disease

We are looking for people in the UK living with Pompe disease to help with research which will explore the effects of Pompe disease on families.

The research is being conducted by Cobalt Research in collaboration with Pompe Support Network and AGSD-UK, and is sponsored by a pharmaceutical company. It will look at what the families experience over time living with Pompe disease. The research will be used to fully understand the burden of the disease which may help in the development of therapies and approaches for managing and supporting Pompe families in the future.

Participating involves completing a short diary for up to 3 days and taking part in a video or telephone interview of up to one hour with a friendly, experienced researcher at a time which is convenient for you. The interview should be interesting to participate in and there will be compensation for your time. The results of the study will be published and shared with Patient Advocacy Organizations.

The research is open to anyone living in the UK aged over 18 with a diagnosis of Late Onset Pompe Disease.

If you are interested in taking part in this project or if you would simply like to find out more information, please contact Lydia Tobutt at Medicys by emailing l.tobutt@medicysltd.co.uk or by phoning Medicys - 01795 502347.
Medicys are working with Cobalt Research on this project.

This is a valuable research project and if you feel able to help, it would be greatly appreciated.

Thank you.



If you would like to discuss this further please contact us - hello@pompe.uk