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. This study has received ethical approval by the London-Surrey Borders Research ethics committee (Project ID number: 19-LO-0250).
There are currently three ways to get involved:
- National online survey: We 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 [email protected] for more information. To take part, please go to: bit.ly/CONCORDsurvey
- Interviews: We are also recruiting healthcare professionals (health care, social care and voluntary sector), commissioners (national or local) and patient group representatives to take part in a one-to-one interview (up to 60 minutes – in person, over the phone or over skype). The purpose of the interviews is to explore preferences for different models of care coordination. For more information, or to take part, please contact: [email protected] | (Tel: 0203 108 3068)
- Focus groups: We 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: [email protected] | (Tel: 0203 108 3068)
For more information about the CONCORD study, please see: https://www.geneticalliance.org.uk/our-work/healthcare-and-delivery/coordinated-care-of-rare-diseases-concord/