Complex Regional Pain Syndrome
The question
To ask the Secretary of State for Health and Social Care, what data is collected on the prevalence of Complex Regional Pain Syndrome in England; and how this data is being used to understand the condition.
Answered by Ashley Dalton
The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) is part of the National Disease Registration Service (NDRS) and NHS England. The NCARDRS aims to collect, curate, quality-assure, and analyse data from patients in England diagnosed and/or treated with rare conditions. Further information about the NCARDRS and the NDRS is available, respectively, at the following two links:
https://digital.nhs.uk/ndrs/about/ncardrs
Over the last five financial years, the National Institute for Health and Care Research has allocated £189,109 for research on Complex Regional Pain Syndrome (CRPS). Research has focused on establishing evidence–based management of CRPS to improve clinical outcomes throughout the care pathway.
There is a National Health Service conditions page dedicated to CRPS, detailing the symptoms, causes, diagnosis, and treatment pathway, which is available at the following link:
https://www.nhs.uk/conditions/complex-regional-pain-syndrome/
NHS England’s Genomics Education Programme and GeNotes resource provides concise information to help healthcare professionals make the right decisions at each stage of a clinical pathway. GeNotes also includes resources on non-genetic rare diseases, and work continues to expand the programme's coverage.
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