Title:	CONCORD – CoOrdiNated Care of Rare Diseases
Project Description:	The CONCORD (CoOrdinated Care Of Rare Diseases) study is looking at how care services for people with rare diseases are coordinated in the UK, and how people affected by rare diseases and health care professionals who treat rare diseases would like them to be coordinated.  It is a collaboration between patients and carers affected by rare conditions, health care professionals with expertise in rare conditions, and health services researchers.
Methodology description:	Poor coordination of care is a problem faced by many people affected by rare diseases, and is an important and common concern among patients and families. Poorly coordinated care means: Some people have access to specialist centres, some do not. Many patients do not have a care coordinator or advisor. Patient information may not be shared effectively between services meaning there may be gaps in care. Patients and families frequently have to attend multiple clinics and travel significant distances to them.
Project organisation
Start date:	1st June 2018
End date:	30th November 2020
Contact person:	Professor Steve Morris
Contact Details:	Primary Care Unit Institute of Public Health Forvie Site Robinson Way Cambridge CB2 0SR Telephone: (01223) 748605 E-mail: sm2428@medschl.cam.ac.uk
Funding information
Funding Organisation:	National Institute for Health Research Services & Delivery Research Programme
Further Information, References and Publications