INCBase - A UK Database for CIDP
Research type
Research Database
IRAS ID
288425
Contact name
Michael Lunn
Contact email
Research summary
INCBase - An International Registry and Research Repository for CIDP
REC name
London - South East Research Ethics Committee
REC reference
24/LO/0435
Date of REC Opinion
16 Sep 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Patients with CIDP attending routine outpatient appointments or treatment sessions will have routine data collected about their neuropathy that would normally be collected as part of the clinical record. This will include baseline demographics (once), diagnostic information about the CIDP (once) clinical examination and treatment details (each attendance) including Patient Reported Outcome Measures (PROMS) that are part of normal care. Samples of blood for serum may be collected at the same time as routine blood sampling for potential biomarker analysis in studies for which consent is obtained.
Research programme
The database will support current and future research efforts for CIDP and CIDP-like illnesses. The main purposes of the registry are 1. to collect a large cohort of patients with basic data from which evidence based diagnostic and treatment criteria can be derived by prospective natural history studies. 2. to collect data on treatment with Immunoglobulins, particularly subcutaneous immunoglobulin which is more difficult to study because of its homecare basis 3. to collect a library of patients who might be subsequently contacted (with their consent) to participate in prospective randomised controlled trials of treatment as yet to be developed.
Research database title
INCBase - An International Registry and Research Repository for CIDP
Establishment organisation
Centre for Neuromuscular Disease
Establishment organisation address
National Hospital for Neurology and Neurosurgery
Queen Square
London
WC1N 3BG