Invitation to participate in research to inform services for rare diseases

Posted by: Mary Glen - Posted on:

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).

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 your preferences for different models of care coordination.

Focus groups will take place on:
– Tuesday 4th February 2020 (11am – 2pm) – virtual using Skype for Business
– Thursday 20th February 2020 (11am – 2pm) – in Birmingham

Travel expenses will be provided.

For more information, or to take part, please contact: holly.walton@ucl.ac.uk | (Tel: 02031083068)

Click here for more information about the CONCORD study.