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Trials & Surveys

Trials 

  • Recruitment open for the MS-STAT2 trial in Secondary Progressive Multiple Sclerosis:

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)
MIROCALS (www.microcals.eu) has now completed recruitment and the final efficacy analysis is scheduled for late 2021. Please direct any queries about the study to: Professor P Nigel Leigh, Chief Investigator, e-mail: p.leigh@bsms.ac.uk, or: peterleigh@nhs.net

 

Surveys

  • Placebo survey (10 minutes)
    Our clinical research training fellow Dr Anne-Catherine Huys is running a survey on doctors’ and patients’ opinion on whether or not placebo treatments should be used in clinical practice; and on what the current clinical practice is. The survey only takes 10 minutes, is anonymous and can be done by clicking this link.

 

PARC survey on understanding how you support patients living with rare neurological conditions to be physically active.
The PARC Team would like to invite you to participate to our survey on understanding how you support patients living with rare neurological conditions to be physically active. The research team would kindly appreciate for your participation, and we hope to achieve a national overview of health care professionals’ experiences, including Neurologists. If you would like to participate, please click on the following link.
Thank you,
PARC Team (National Hospital for Neurology & Neurosurgery, UCLH & Collaborators).

 

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 info@nashstudy.co.uk

Audit Questions

NASH3 Protocol

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  • Delivery of the diagnosis of a progressive neurological condition - PhD Project
  • Neurologists who deliver the diagnosis for conditions such as MND, MS, HD, PD are kindly asked to complete this short survey about their practice and perspectives on diagnosis communication for a PhD project at Lancaster University - Link
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  • In addition, neurologists who would like to participate in a qualitative study on the same project and talk about their experiences of breaking bad news can find more information here and send an email to e.anestis@lancaster.ac.uk.

 

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 (sh7g13@soton.ac.uk)

 

RECODE-DCM – “Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy”.
What problem are we addressing?
Degenerative Cervical Myelopathy (DCM), arises when arthritic changes of the cervical spine compress and injure the spinal cord. It is estimated to affect up to 2% of adults. Currently few patients make a full recovery, living with life-long disability and poor quality of life. Research advances are urgently needed.

It is estimated that 85% of healthcare research fails to deliver an actual or potential healthcare benefit; deficiencies in the design of research, especially failure to consult relevant stakeholders, are a leading contributor.

How can we address this in DCM?
Organizations such as the James Lind Alliance (JLA) and Core Outcome Measures in Effectiveness Trials (COMET) advocate multi-stakeholder priority-setting partnerships and core-outcome sets.

AOSpine and the University of Cambridge are leading a JLA-informed DCM study. RECODE-DCM seeks to engage stakeholders from across the globe to reach a consensus on the research priorities, a core outcome set, core data elements, a core measurement set and the definition of DCM.

We need your help!
The involvement of all stakeholders is essential: health professionals, patients, relatives and caregivers. Participation involves completing a short online survey. All participants can register to be indexed as collaborators on RECODE-DCM publications.

Survey link: https://recode-dcm.com/how-to-participate  
Further information: https://recode-dcm.com/.
Queries to Olesja Hazenbiller: ohazenbiller@aospine.org

Contact Us

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