The next stage of the CONCORD project is now live! Have your say on how services should be coordinated for patients with rare and undiagnosed conditions.
COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with Genetic Alliance UK and others.
We are currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via our online survey. For most people, the survey will take around 30 minutes to complete. The findings will be used to make recommendations with the aim of influencing policy.
You can complete the survey if:
You must be 18 or over to complete the survey. If you are under 18, your parent or carer can complete the survey for you.
We have created a social media toolkit complete with suggested social media posts, infographics, hashtags and information on the study for you to share with your community.
You can download the pack here.
There is more information about the study here. If you have any questions, or you would prefer to complete a paper copy of the survey or answer the questions over the telephone, please contact Emma Hudson, Research Associate, UCL at [email protected] or on 0207 679 1854.