News & Events

Have your say on care coordination

Last Reviewed 6/08/2019

By Dr Amy Hunter

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.

Complete the online survey now

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.

Who can complete the survey?

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.

How long do I have to complete the survey?

The survey will close on Sunday 8 December.

How can I help share the survey?

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.

You can download infographics as suggested in the toolkit here.

Where can I get more information about the study?

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.

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