Observational Study in Adults with Multifocal Motor Neuropathy (MMN)
Research type
Research Study
Full title
A Multicenter Prospective Longitudinal Study of Clinical Outcomes, Disease Course, Health-Related Quality of Life, and Health Care Resource Utilization in Adult Patients With Multifocal Motor Neuropathy.
IRAS ID
335251
Contact name
Simon Rinaldi
Contact email
Sponsor organisation
argenx BV
Clinicaltrials.gov Identifier
Duration of Study in the UK
1 years, 10 months, 25 days
Research summary
This research study looking at patients with Multifocal Motor Neuropathy (MMN) is designed to collect data on how the disease progresses and how this affects quality of life for MMN patients.
MMN is a rare inflammatory peripheral nerve disorder that occurs in adults. It causes damage to the nerves in the arms and legs. One side of the body may get more affected than the other. Symptoms of MMN include muscle weakness, twitching, and cramping (uncontrollable movement in the muscles). MMN is treated with infusions of immunoglobin, but despite this many patients get slowly worse and become more disabled as the disease progresses.
About 150 adults will take part in this worldwide study being conducted at multiple sites. Each study participant will be in the study for up to 24 months.
If the study participant receives their routine treatment for MMN at the study site, they will be asked to visit the study site as part of their routine health checks. The study procedures and assessments will be done about every 3 months. If the study participant receives their routine treatment for MMN at home and choose to join the study, they will be asked to visit the study site every 3 months.
If the study participants are receiving medication for MMN, either by injection into a vein (IV) or an injection under the skin (subcutaneous), they will be asked to give a blood sample.
There is no experimental treatment or medication/study drug being given in this study. Data is collected from the study participants by asking for study questionnaires to be completed. The study participants’ medical notes will also be reviewed to collect past data (retrospective data).
The information from the study will be used to help doctors look after patients with MMN in the future.REC name
Wales REC 4
REC reference
24/WA/0024
Date of REC Opinion
27 Feb 2024
REC opinion
Further Information Favourable Opinion