Frequently Asked Questions
How is this research funded?
Funding for this study has been provided through a research grant from the National Institute for Health and Care Research (NIHR) Policy Research Programme (PRP). The number for this grant is NIHR205991.
What is “CONCORD2”?
CONCORD stands for the COordiNated Care Of Rare Diseases. The CONCORD 2 study follows on from the original Coordinated Care of Rare Diseases (CONCORD) study which found evidence of a lack of co-ordinated care for people affected by rare diseases, which could have negative impacts on the physical and mental health of patients and families.
What are the aims of this study?
The CONCORD2 study is examining which approaches to care coordination work best, for people with a rare condition, parents/carers and health professionals. This includes examining the costs and value for money of different types of care coordination that exist in the NHS in England today. We will make recommendations from our study on how care should be coordinated for people with rare conditions.
How will you ensure the independence of this research?
The study is being monitored in line with the National Institute for Health and Care Research (NIHR) Policy Research Programme (PRP) contracting and monitoring processes to ensure delivery against the objectives.
The protocols for this study will be pre-registered and publicly available, and any deviations from the protocols will be made clear in outputs from this study.
The study also has two Advisory Groups, which review all key aspects of the study design, implementation and interpretation.
What will happen to the research findings?
Findings from the CONCORD2 evaluation will be publicly available and linked on this website.
In line with NIHR’s policies, any academic journal articles resulting from this study will be Open Access.