NEUROINFLAMMATORY DISEASE STUDY (NIeDS) 1
Research type
Research Study
Full title
A STUDY OF THE BURDEN AND NEEDS OF CHILDREN WITH CNS NEUROINFLAMMATORY DISEASE
IRAS ID
317262
Contact name
Evangeline Wassmer
Contact email
Sponsor organisation
Birmingham Women`s and Children's NHS Trust
Duration of Study in the UK
4 years, 0 months, 1 days
Research summary
NIeDS is an observational study which aims to determine the burden and needs of childhood neuroimmune disorders of the central nervous system (CNS) also known as childhood CNS neuroinflammatory disorders (CNID). Immune-mediated inflammatory diseases of the central nervous system are a group of neurological disorders in which inflammation and/or demyelination are induced by cellular and humoral immune responses. They include diseases such as multiple sclerosis (MS), neuromyelitis optica spectrum disorders (NMOSD), acute disseminated encephalomyelitis (ADEM) and anti-NMDA receptor encephalitis (NMDAR encephalitis).
NIeDS describes a cohort of children affected with a CNS neuroinflammatory disorder. The study will describe the impact of the disease, the burden and needs of children. The study will explore and describe the educational, emotional, behavioural and social impact of the disorder. The study will compare this to other chronic neurology disorders and healthy controls.
NIeDS has been designed following consultation with various parties (including patients)
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
22/NW/0329
Date of REC Opinion
13 Oct 2022
REC opinion
Further Information Favourable Opinion