MSA Trust

Open MSA Studies

Use the tabs to find out more about current open MSA studies…

Do you suffer from dizziness, light-headedness and feeling faint?

The REDWOOD Study is a clinical research study looking at an investigational drug called ampreloxitine (also known as TD-9855), for people with Multiple System Atrophy (MSA).

Upon standing, some people with MSA experience dizziness, light-headedness, feeling faint, or feeling like they might black out due to a drop in blood pressure. Researchers want to learn whether ampreloxitine can reduce these symptoms and assess how safe it is.

If you suffer symptoms such as these and are 30 years of age or older you may be able to take part. More information can be found here.

Want to know more? Please see the table below of the current open sites. Our MSA Trust Nurse Specialist are happy to discuss this study with you, however it is important to first discuss with the study centre about the possibility of taking part.

Project Site Name Principal Investigator Contact Details for enquiries Area City  MSA Nurse Specialist
The National Hospital for Neurology & Neurosurgery Dr. Valeria Iodice Scott Johnstone: 07910 591343  or 0203 448 3470; scott.johnstone@nhs.net Greater London London  

Samantha Pavey

0203 371 0003

Barts Hospital Dr. Manish Saxena Dr Manish Saxena: 0207 882 3856; m.saxena@qmul.ac.uk Greater London London Samantha Pavey

0203 371 0003

Royal Devon and Exeter Hospital (Wonford) Dr. Raymond Sheridan Rob James: 01392 408145 Devon Exeter Jill Lyons

01934 316119

Re:Cognition Health (Plymouth) Dr. Steve Pearson George Robinson: 01752 712046; grobinson@re-cognitionhealth.com Devon Plymouth  

Jill Lyons

01934 316119

Re:Cognition Health Ltd (London) Dr. Emer MacSweeney George Robinson: 0203 808 5439 ; grobinson@re-cognitionhealth.com Greater London London  

Samantha Pavey

0203 371 0003

Re:Cognition Health Ltd (Birmingham) Dr. Emer MacSweeney George Robinson: 0121 468 2045 grobinson@re-cognitionhealth.com West Midlands Birmingham  

Emma Saunders

0330 221 1030

Suite 5, First Floor, Golden Jubilee Wing, King’s College Hospital, Denmark Hill, London, SE5 9RS Professor. Ray Chaudhuri 020 3299 8336 South East London London  

Samantha Pavey

0203 371 0003

Manchester Centre for Clinical Neurosciences Salford Royal NHS Foundation Trust Stott Lane, Salford M6 8HD Dr. Christopher Kobylecki neuroresearch.nurse@srft.nhs.uk

0161 206 7568

North West England Salford  

Emma Saunders

0330 221 1030

 

 

 

A new study of Exenatide in MSA is now open and seeking people with MSA to participate.

Exenatide is a drug used to treat diabetes and has shown potential benefit to people with Parkinson’s Disease in previous studies. The open label, randomised controlled trial, coordinated by Professors Foltynie, Houlden, Morris and Dr. Chelban will be carried out at The National Hospital for Neurology in London. People from any location can be considered for the trial if they meet the inclusion criteria and are able to travel for the study visits.

In the first instance, contact your MSA Nurse Specialist for an informal chat, or Christine Girges on the Exenatide Research Team can be contacted via email c.girges@ucl.ac.uk for more information and an informal discussion. If suitable, people wishing to be considered can then ask their doctor to refer them for a one-off clinical assessment in the MSA clinic at Queens Square, via email to Violet.Lefevre@nhs.net.

Below are useful links to find out more:

Exenatide Once-weekly as a Treatment for Multiple System Atrophy – Full Text View – ClinicalTrials.gov

Find out more about the very promising Exanatide Trial backed by MSA – Multiple System Atrophy Trust (msatrust.org.uk)

Researchers begin trial of drug to slow progression of neurodegenerative condition Multiple System Atrophy | UCLH Biomedical Research Centre (nihr.ac.uk)

This study is looking for people with MSA to participate, with the aim to improve the accuracy of early diagnosis and track disease progression.

There are two elements to this, a longitudinal study based at specific clinics in London, Oxford, Cambridge, Manchester, Brighton, Newport and Newcastle – which have a strong history of supporting people with MSA. There is also an option to take part in a cross-sectional study where patients can participate from anywhere in the UK or at one of 28 UK based research centres.

The longitudinal study involves several clinical and biomarker assessments over a three year period which include: a detailed neurology review, cognitive function tests, brain scans and blood samples. This will be followed by a ‘lighter touch’ follow up over the phone or during a clinic visit for a further two years.

The cross-sectional study involves donating a one-off blood sample at your local GP or hospital, together with filling in questionnaires at home.

We would like to include people with MSA and people unaffected by neurological diseases. Since we are investigating MSA genetics, blood relatives of those affected by MSA are not eligible for the study.

Ultimately, it is hoped that the research will aid the development of new and improved treatments for MSA and raise the profile of MSA research in the UK.

If you are interested in participating in MSA research, please contact Alyssa Costantini, Research Associate, institute of Neurology, UCL –   a.costantini@ucl.ac.uk or ABN MSA Research Fellow, Viorica Chelban, UCL, v.chelban@ucl.ac.uk

Open MSA Studies

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