CONCORD2
Research type
Research Study
Full title
Evidence building and evaluation of the UK Rare Diseases Framework 2021-2026 with respect to the coordinated care of rare diseases: the COordiNated Care of Rare Diseases 2 (CONCORD2) study
IRAS ID
352244
Contact name
Stephen Morris
Contact email
Sponsor organisation
The University of Cambridge
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
The overarching aim of this study is to examine whether the UK Rare Diseases Framework, delivered through England’s Action Plans, has succeeded in improving the lives of people with rare diseases. We are proposing to address this question specifically with respect to care coordination, and to do so will examine which models of care co-ordination work best, for patients, carers and health professionals.
Rare diseases affect 3.5 million people in the UK. They can be severe and disabling, often affecting many parts of the body. As a result, patient care often involves visiting a variety of health professionals in different locations. This can be a problem if services are not provided in a joined-up way: information may get lost; there may be gaps in services; and, care may not be as good as it should be. We know from previous work we have done that care co-ordination is one of the most important parts of care for people affected by rare diseases.
The research team will do a review of existing evidence on the effectiveness and costs of different models of care co-ordination, and what affects how easily different ways of co-ordination can be implemented. Then, we will interview patients, carers and health professionals with experience of different models of care co-ordination and examine what they think about these models and how well they work. We will also collect information using a questionnaire. We will examine the costs and value for money of different models of care co-ordination that exist in the NHS in England.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
25/WM/0098
Date of REC Opinion
10 Jun 2025
REC opinion
Further Information Favourable Opinion