CONCORD Survey about the Coordination of Care for Rare Conditions

28 November 2019

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.

They are currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via their 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 have a rare or undiagnosed condition;
  • you have experience as the parent or carer of someone affected by a rare or undiagnosed condition;
  • or you are a healthcare professional working in the field.

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.

The survey will close on Sunday 8th December.

To find out more and complete the survey, please click here.