Congenital Insensitivity to Pain - Epidemiology and Management
Research type
Research Study
Full title
Investigation into the presentation, diagnosis and management of congenital in sensitivity to pain – a surveillance study
IRAS ID
282740
Contact name
alasdair parker
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust
Clinicaltrials.gov Identifier
A095805, Applicants Own reference number
Duration of Study in the UK
3 years, 6 months, 1 days
Research summary
Congenital insensitivity to pain (CIP) is a genetic disorder characterised by an inability to perceive pain present from birth due to lack of, or malfunction of, pain receptors. It is a very rare disorder, and clinicians assessing children are unlikely to have seen a previous case.
We aim to use the existing British Paediatric Neurology Surveillance Unit to Identify patients of 0-18 years old, across the UK over a 4 year period.After carefully supplying information and obtaining appropriate consents, we would request copies of medical correspondence and other records held by the GP.
These would be securely transferred and analysed with key information stored in a secure database without identifiable components such as patient name/address.
From these we aim to map the key features within the presentation, investigations including genomic causation and management.
Using this data we aim to identify the recommended best practice for investigation / diagnostic criteria as well as surveillance/management.
REC name
London - West London & GTAC Research Ethics Committee
REC reference
21/PR/1064
Date of REC Opinion
2 Aug 2022
REC opinion
Further Information Favourable Opinion