Paediatric-onset CIDP: UK-wide epidemiology and outcomes study
Research type
Research Study
Full title
A UK-wide study of paediatric-onset chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) epidemiology, clinical presentation and outcomes.
IRAS ID
317747
Contact name
Michael Lunn
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
UCL Data Protection Number, Z6364106/2022/08/93
Duration of Study in the UK
15 years, 0 months, 1 days
Research summary
Chronic inflammatory demyelinating polyradiculopathy (CIDP) usually presents in adulthood. Childhood, or paediatric, onset CIDP is rare, but the population prevalence is the UK is unknown. Its natural history remains poorly understood.
We propose to measure natural history and outcomes of paediatric-onset CIDP, to inform and guide research, as well as identify and collate patient cohorts for the purpose of future study.
We will identify paediatric-onset CIDP cases managed within UK paediatric neuromuscular specialist centres using a combination of adult and paediatric clinician reporting, as well as identification through the National Immunoglobulin Database.
We will identify demographics, age of onset, clinical characteristics, treatment and outcomes of these patients. We will also collect blood from patients with paediatric-onset CIDP for genetic analysis and research into blood markers that may allow improvements in diagnosis and monitoring of these conditions.
REC name
Wales REC 4
REC reference
23/WA/0031
Date of REC Opinion
5 Apr 2023
REC opinion
Further Information Favourable Opinion