Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to Written Parliamentary Question 85637, when his Department expects to publish the research funded by the National Institute of Health and Care Research that will look at how to cost-effectively improve care coordination to align to the needs of patients.

Steps are being taken to improve the coordination of care for all rare diseases as a priority under the UK Rare Diseases Framework. Through the England Rare Diseases Action Plans, which set out actions to deliver against this priority, we commissioned research funded by NIHR to build on the CoOrdinated Care Of Rare Diseases (CONCORD) study with RAND Europe and University of Cambridge. The NIHR-funded CONCORD study sought to investigate how services for people with rare diseases are coordinated in the United Kingdom, and how people living with rare diseases, and healthcare professionals who treat rare diseases, would like them to be coordinated. The new study will help us understand how to best make improvements to care co-ordination in a way which aligns to the needs of patients with rare conditions and which is as cost-effective as possible for the NHS. The study is due to end in May 2026. Findings will be submitted to scientific journals after this date. Further information is avaiable on the CONCORD study at the following link:

https://www.ucl.ac.uk/population-health-sciences/epidemiology-health-care/research/behavioural-science-and-health/research/health-care-organisation-and-management-group/concord-coordinated-care-rare-diseases