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Coordinated Care of Rare Diseases Study at UCL

02 October 2019

Coordinated Care of Rare Diseases Study at UCL

CONCORD (Coordinated Care of Rare Diseases) is a research study which looks at how care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with NHS Institutions and charitable partners. Nerve Tumours UK is not involved in any content or development of the study, however we do support their research. 

There are currently two ways to get involved:

  • National online survey: They are recruiting patients (18 or over), carers and healthcare professionals caring for people with rare or undiagnosed conditions to take part in a national online survey which takes around 30 minutes. Please contact for more information. To take part, please click on the link below: 


  • Focus groups: They are currently recruiting patients (18 or over) and carers to take part in focus groups (in person or over skype). The purpose of the focus groups are to explore preferences for different models of care coordination. Focus groups will take place in November. For more information, or to take part, please contact: | (Tel: 02031083068)

For more information about the CONCORD study, please click on the link below

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