MS is rare in children and young people, but up to 5-10% of adults with MS are believed to have had onset of their first symptoms before the age of 16 years (and much more rarely before the age of around 10 years).
Paediatric-onset MS (PoMS) typically features highly active inflammation. Although progression of disability in the years following diagnosis is usually slow, there is often rapid accumulation of inflammatory brain and spine lesions, alongside brain volume loss. In the longer-term, children and young people with MS go on to develop physical and cognitive impairments at a younger age than people with adult-onset MS.
We work closely with Paediatric Neuroimmunology team of Addenbrooke’s Hospital, part of Cambridge University Hospitals NHS Foundation Trust, which is one of the 7 hospitals in England which specialises in children’s neuroinflammatory disease and PoMS in England.
MARMALADE-C: Multimodal Assessment of Re-Myelination And Long-chain neurofilament Assay following Demyelinating Events in Children is the name of the sub-study for children in the ARMOUR study
ARMOUR: A study assessing remyelination in adults and children with central nervous system demyelinating diseases
Nerves in the brain and spinal cord are normally surrounded by a protective layer of a substance called myelin (similar to the plastic insulation of an electric cable). In multiple sclerosis (MS), and in other demyelinating conditions of the central nervous system (CNS), the immune system attacks the myelin, leaving nerve fibres (similar to the metal wire in the cable) unprotected. This causes nerves to malfunction, which can result in symptoms such as changes to vision, sensation, movement and cognition. Over time, unprotected nerve fibres die, leading to progressive disability.
To avoid this happening, we are trying to understand remyelination – the process by which myelin is regenerated – as this could reduce disability and prevent progression. At present, the tests employed for the diagnosis and monitoring of MS and other demyelinating conditions of the CNS are not sensitive to detecting the damage or the repair of damage (particularly standard MRI brain scans). Our study will therefore assess whether a combination of additional assessments (including specialised MRI scans, tests of the eyes, and blood tests) could be incorporated into routine clinical care for people living with MS.
The study is observational, does not change your regular care, and there are no risks from these specialised assessments. Participants will attend between 1 and 3 study visits over 12 months each lasting up to 3-4 hours. Remyelination is assessed by looking at the changes in eye tests and MRI brain scans between the initial and final visits.
The study is being conducted in Cambridge. Participants should have relapsing-remitting, primary progressive, or secondary progressive MS; myelin-oligodendroctye glycoprotrein antibody associated disease (MOGAD); or neuromyelitis optica spectrum disease (NMO). We are also seeking to recruit healthy volunteers to help us interpret our findings. There are no age limitations to recruitment, but participants will need to be able to cooperate with the eye tests and other investigations.
Further information is available from the study team:
Nick Cunniffe (Chief Investigator): email@example.com
Alasdair Coles (Co-Investigator): firstname.lastname@example.org
Gioia Riboni-Verri (Co-Investigator): email@example.com
a study examining eye movements in people with MS who have difficulty moving both their eyes in the same direction simultaneously due to demyelination in a key part of the brain (more details on another page?)
Clinical trials in PoMS:
none currently open for recruitment