A research study, funded by the National Institute for Health Research, has been launched to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future.
Lead by researchers at University College London in collaboration with Genetic Alliance UK and others, the 'Concord Study' is looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via an 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?
• Anyone with rare or undiagnosed condition (over 18 years old)
• The parent or carer of someone affected by a rare or undiagnosed condition
• Healthcare professionals working in the field
Complete the online survey here.