The Department of Health and Social Care has circulated a care coordination survey on CONCORD2 (COordiNated Care Of Rare Diseases 2). CONCORD2 is a research study that aims to examine the best approaches to care coordination for people affected by rare conditions, and develop recommendations about how care should be coordinated for these individuals.
The team has developed a survey to capture how the care of people affected by rare conditions is coordinated, and the costs and benefits of this to patients and families. It is hoped that the results of this survey will support improvements in how care is coordinated for people affected by rare conditions.
If you would like to take part in this survey then please click on one of the links below, depending on whether you have a rare or undiagnosed condition, or are the parent or carer of a patient with a rare or undiagnosed condition:
If you are 18 or over and with a rare or undiagnosed condition and would like to take part in the survey, please click here.
If you are the parent or carer of a patient with a rare or undiagnosed condition and would like to take part in the survey, please click here.
It takes most people around 30 minutes to complete this survey. If you do choose to participate and click on one of the links above, you will be taken to a website where you will be provided with more information about the survey. If on reading this information you decide you still want to take part, you will be asked to complete the survey online. The deadline to fill in the survey is the 29th May.
You do not have to take part in the survey if you prefer not to; taking part in this survey is voluntary. You will not be asked to give your name or contact details, and they will not tell anyone that you have taken part in the survey. All information collected during the survey will be kept strictly confidential.
