Understanding the impact of Fabry in Adolescent Patients

The purpose of this research is to understand the burden on adolescent (12–15 years old) patients with Fabry due to their Fabry disease symptoms, disease management and current treatment as well as the views of their caregivers.

Understanding the impact of Fabry in Adolescent Patients

We are looking for people living with Fabry disease to help with research which will explore the effects of Fabry disease on families. The research is being conducted by an agency called Adelphi Values and is sponsored by a pharmaceutical company.

Specifically, the purpose of this research is to understand the burden on adolescent (12–15 years old) patients with Fabry due to their Fabry disease symptoms, disease management and current treatment as well as the views of their caregivers.

The views of the impact of Fabry disease and its treatment on 12-15 year olds has not been looked at before. Likewise, the impact of Fabry disease on parents/caregivers has not been investigated. So your views are really important to understand what it means to people like you. The survey will take up to 1 hour to complete as there are quite a few questions, but as we are looking to capture the true extent of the impact of your disease, we appreciate you taking the time to answer this survey.

The survey has two parts, with a section to be answered by you and another section to be completed by your child (with your support if required).

Upon completion of the survey, you will receive a £36 Amazon e-gift voucher as remuneration in appreciation of your time. The survey will comply with the UK Data Protection law and the British Healthcare Business Intelligence Association’s Legal and Ethical Guidelines. All information provided in the survey will remain anonymous and will only be reported as group data with no identifying information. You will have the right to refuse to answer questions or withdraw at any time.

If you would be interested in taking part in the survey or have any questions please contact Medeah at m.yaqub@rd-rp.com