Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to gain an understanding of the impact Covid-19 is having on people with a rare disease and their caregivers.
Results from this survey will be collated anonymously and hopefully it will provide rapid feedback to clinicians and Genetic Alliance UK (an umbrella organisation for Rare Disease groups which CLDF is a member of) about the current needs expressed by patients and caregivers.
The study has been ethically approved by Queen’s University Belfast, Northern Ireland. A copy of the research ethics approval letter can be provided if required.
Here is the link to the survey.
Thank you for your help with this research and for considering participation in this project.
The IMPaCCT Study Team