Neurological Disorder Studies

Dimethyl Fumarate (DMF) Observational Study (1504080)

The primary objective of the study is to determine the incidence, type, and pattern of serious adverse events (SAEs), including but not limited to infections (including opportunistic infections), hepatic events, malignancies, and renal events, and of adverse events (AEs) leading to treatment discontinuation in patients with MS treated with dimethyl fumarate (DMF). Secondary objectives of this study in this population are as follows: To determine dimethyl fumarate (DMF) prescription and utilization patterns in routine clinical practice in patients with multiple sclerosis (MS); To assess the effectiveness of dimethyl fumarate (DMF) on multiple sclerosis (MS) disease activity and disability progression in routine clinical practice as determined by the Expanded Disability Status Scale (EDSS) score and multiple sclerosis (MS) relapse information; and To assess the effect of dimethyl fumarate (DMF) on health-related quality of life, healthcare resource consumption, and work productivity.

The Impairment of Memory in Epilepsy (TIME) Version 2 (1303751)

The project aims to investigate the clinical features and underlying mechanisms of memory problems caused by epilepsy. The study will comprise several components, addressing distinct but related questions. 1) What are the clinical neuropsychological features of Transient Epileptic Amnesia. Is TEA caused by cerebrovascualr disease? 2) Do patients with Transient Epileptic Amnesia exhibit accelerated forgetting? What factors influence its severity? 3) Does Focal Retrograde Amnesia exist in patients with TEA, what causes it and does it respond to treatment? In all cases, interviews may be recorded on audio or video tape in order to assist accurate analysis. This will only be done with the express consent of the participant. Again, with the consent of the participant, a letter detailing the results of the interviews and investigations will be written to the relevant consultant and GP.

The Parkinson’s Pain Study (1405933)

Over half of patients with Parkinson’s disease suffer from chronic pain. Despite this, there has not been much research on pain in Parkinson’s disease. The primary aim of this study is to increase our understanding of pain in Parkinson’s disease, and identify biomarkers of pain. Biomarkers are small changes in the body that can help with diagnosis, tracking the disease and explaining the disease mechanism. In this case we hope that biomarkers will explain why some patients develop pain and help direct treatment.

SUMS (1602211)

This multi-centred randomised controlled trial with blinded outcome assessment is investigating the clinical and cost effectiveness of a home based self management standing programme in people who are severely physically impaired with multiple sclerosis (MS). 140 severely physically impaired people with MS will be randomly allocated to either a home based, self management standing frame programme (with advice and support) along with their usual care or to usual care alone. Participants will be asked to stand 3 times weekly over 20 weeks. A range of outcomes, including motor function and balance, will be measured at intervals throughout the study and compared between the groups.

UK MS Register (1611328)

Linkage between Clinical data and Patient Reported outcome measured via the internet to better determine impact of MS on patients.