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|Trials & Surveys|
Jeremy Chataway (Chief Investigator) and the MS-STAT2 team would be extremely grateful if members of the ABN could put forward suitable patients for the ongoing MS-STAT2 study. Routes of referral include:
1. Directing patients to the trial registration website, www.ms-stat2.info
2. Or emailing the study team at UCLH.QSMSC@nhs.net.
This NIHR, UK and US MS society funded, academically-led phase 3 trial, will recruit 1180 patients with secondary progressive multiple sclerosis (SPMS) at over 30 sites across the UK and Ireland. This builds upon results from the original MS-STAT phase 2 study, which demonstrated high dose simvastatin reduced the annualised rate of brain atrophy by 43% compared to placebo over 2 years1.
Key inclusion criteria include: a diagnosis of SPMS in patients aged 25-65; evidence of disability progression over the previous 2 years; an EDSS score 4.0-6.5 (significant disability but able to walk approximately 500m, to those who require walking aids to walk at least 20m). Key exclusion criteria include current use of disease modifying therapies, primary progressive MS or current use of any statin. The primary outcome measure will be time to initial disability progression. The intervention will be 80mg simvastatin or placebo, randomised 1:1 over a 3 year trial. Active study sites are outlined on the map.
Ref: 1. Chataway, J et al. The Lancet 383.9936 (2014): 2213-2221.
MIROCALS (Modifying Immune Response & OutComes in ALS)
PARC survey on understanding how you support patients living with rare neurological conditions to be physically active.
Help raising awareness of seizure audit in hospitals
Could you participate in the third round of the National Audit of Seizure Management (NASH) (http://www.nashstudy.org.uk)? NASH sets out to describe the variations of Epilepsy care given across hospitals in the UK and to highlight opportunities to improve care. There have been 2 earlier rounds of NASH in 2011 and 2013. As well as European Audit (EuroNASH) (http://www.euronash.eu), which took place in 2017/2018. The UK audits included over 80% of EDs and data were collected on over 8000 patients. Significant deficiencies in the coordination of care were identified including:
- Almost two thirds of patients attending ED with known epilepsy had not seen a specialist within the previous 12 months or were on therapy that was sub-optimal
- Assessment of the acute seizure was less than optimal in more than half of patients
- Less than half were referred onward to neurology or epilepsy services for further investigation and management.
- Considerable variability in care was identified. Some sites performed consistently well, despite on-going challenges, whilst others did not.
We believe that now is the time to undertake another round of the Audit to identify whether care has improved following an opportunity to implement changes. Each participating Trust is asked to identify 30 consecutive patients attending the ED with a seizures, and provide anonymous data via a secure website. Feedback from previous audits is that this was simple to do and most data were collected by medical staff. Further information can also be found at http://www.nashstudy.org.uk. If you/your trust would like to participate, please contact firstname.lastname@example.org
Researchers at the University of Southampton are looking for neurologists to take part in a MS research project.
The project is exploring your experiences of communicating prognosis to patients with Multiple Sclerosis. Participation will involve a telephone interview at a time and place that is convenient for you and the interview is predicted to last around 45 minutes to an hour. In return for your participation, you will receive a £15 Amazon voucher and a certificate stating that you have helped with this research, which might be useful in your professional appraisal or revalidation. We would also be happy to provide a transcript of the conversation if you wish, for use as an example of reflection on one’s practice. The interview will provide an opportunity for reflection that may be useful for your appraisal. Ultimately, the research aims to contribute towards understanding and improving prognosis communication and Healthcare Professional-Patient relationships. If you are interested in participating or simply want to find out more, please contact Samantha Hornsey at the University of Southampton (email@example.com)
RECODE-DCM – “Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy”.