Open MSA Studies

Google are looking to improve how well speech recognition systems (like Alexa or your mobile phone voice recognition) understand people with speech problems.

Taking part involves recording yourself reading lists of words and phrases at home. A professional speech and language therapist will support you with this, and they offer a £50 gift voucher. Download the advert below for more details.

If you would like to find out more, email project.euphonia@lsvtglobal.com or follow this link and someone will get in touch with you with more information.

This study is looking for people with MSA to participate, with the aim to improve the accuracy of early diagnosis and track disease progression. We would like to include people with MSA, and also those who have not necessarily received a diagnosis of MSA as yet, but have MSA-like presentation / uncertain forms of atypical parkinsonism.

Alongside, the study is also looking to recruit people unaffected by neurological diseases. Since we are investigating MSA genetics, blood relatives of those affected by MSA are not eligible for the study.

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.

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 this study, please contact:

Riona Fumi, Prospect Coordinator

Email: prospect@ucl.ac.uk

Telephone: 07825 076394

The Neurodegeneration Imaging Group, at the University of Exeter, is recruiting for a new study on Multiple System Atrophy.

Short study Title: Synaptic loss in Multiple System Atrophy (MSA)

Who: We are looking for patients diagnosed with Multiple System Atrophy (MSA-P) aged 45-70, who are willing and able to participate in a research study sponsored by the University of Exeter.

What: The study consists of the following procedures which will be performed over four (4) visits at baseline which will be repeated in another four (4) visits after approximately one year:

• Clinical assessments;
• Brain imaging scans with PET and MRI;
• Blood sample collection;
• Lumbar puncture (optional)

The research will take place in West London, at the Hammersmith Hospital Campus.

If you decide to take part we will provide taxi transport and refreshments. You will be compensated over the course of the study for your participation.

One type of imaging requires the injection of a small amount of a radioactive agent. Full details of what the study involves are explained in a Participant Information Sheet

Why: Our aim is to help understand if synapses and glucose levels within the brain of patients with MSA are altered during the disease and what role these changes could have to clinical symptoms. Our findings will provide a deeper understanding of the brain changes specific for the disease, which will help us track the progression of MSA. More importantly, this study will help with the discovery and development of new medications aiming to delay the progression of symptoms caused by MSA.

The study is conducted by the Neurodegeneration Imaging Group, lead by Professor Marios Politis (Principal Investigator), and sponsored by the University of Exeter. The work carried out by the Neurodegeneration Imaging Group aims to investigate the causes of neurological diseases and identify new targets for treatments.

If interested and would like more information, please see the information sheets below or please email us at:

Holly Wright

h.wright3@exeter.ac.uk

Telephone:

01392 722935

or

Dr Edoardo de Natale

e.de-natale@exeter.ac.uk

07503741242

What is brain donation?

Brain donation is a process that allows people with (and without) neurological conditions to choose to donate their brain in the future, to be used in relevant research studies.

Researchers study brain tissue of people with neurological conditions in order to better understand conditions such as MSA. The aim of such research is to provide insights that allow us to better understand the cause of MSA, which contributes to the development of treatments and furthers the cause to find a cure.

This MSA Trust factsheet explains Brain Donation in more detail.

Find out more about the Queens Square Brain Bank and the donation process here.

French digital company Music Care is offering people with Multiple System Atrophy a one-month free trial of it’s music therapy app, with the option to complete an online survey to provide feedback on the app.

See this website for further information or download the e-leaflet below

MSA researchers wish to gather evidence about the use of feeding tubes in MSA.

They invite people diagnosed with MSA to complete this short, 9 question online survey about swallowing issues and feeding tubes.

Impaired swallowing (known as dysphagia) is a feature of MSA which can develop during MSA. On average dysphagia is moderately serious after 5 years or so.

Aspiration pneumonia – food and liquids going into the lungs instead of the stomach – can occur as the problem gets worse. And that is why in some cases patients may undergo a procedure known as a PEG – Percutaneous Endoscopic Gastrostomy. A tube is fitted which passes through the abdomen straight into the stomach through which food and liquids can be passed. Without it, patients can become malnourished and dehydrated. Gastrostomies may be called for in a number of other neurological and non-neurological conditions including Parkinson’s and Motor Neurone Disease. But in MSA a body of evidence for when and how PEGs should be employed and what the outcomes are likely to be in terms of effective disease management and quality of life has not yet been built up.

This project intends to address that and gather evidence for the role, safety and timing of gastrostomy insertion in MSA. We would like to hear from patients, carers and family members who are willing in contributing their detailed experiences and insights into swallowing impairments and their experience with devices such as gastrostomies. Please join us for a conversation on the use of gastrostomy in MSA as we want to explore patient preference and experiences with regards to discussion and advanced planning around swallowing, nutrition, and gastrostomies. The aim of this will be to try to understand when patients feel is best to approach these topics and the way it should be done, whilst recognising the importance of individual circumstances as well as looking at the impact of gastrostomy insertion on quality of life in MSA patients and carers. To join us, please use the link below

https://de.surveymonkey.com/r/F6X29N6

Thank you for all your help and support with our research!

Dr Viorica Chelban

UCL Queen Square Institute of Neurology

Neurogenic orthostatic hypotension (nOH) occurs when the body loses the ability to regulate
blood pressure as a person moves from sitting to standing. Upon standing, some people living
with multiple system atrophy (MSA) experience a sudden drop in blood pressure. This can
cause dizziness, lightheadedness, and feeling faint or like you might blackout. These symptoms
caused by drops in blood pressure are called symptomatic nOH.

Theravance Biopharma is looking for volunteers to take part in the Phase 3 CYPRESS clinical
research study (NCT05696717) to look at whether an investigational drug, called
ampreloxetine, works and how safe it is when taken over several months to treat symptomatic
neurogenic orthostatic hypotension (symptomatic nOH) in people with multiple system atrophy
(MSA). The primary assessments will determine whether the investigational drug can improve
the symptoms of nOH.

If you have MSA, are over 30 years old, and experience dizziness, lightheadedness, feeling faint,
or like you might blackout, then you may be eligible to participate. If you qualify and join the
study, participation will last approximately six months, followed by an optional 2-year long-term extension in which all participants will receive the investigational drug.

Participants may be eligible to participate in the study remotely (e.g., from your home) after an initial in-office
study visit.

To learn more about the CYPRESS trial, please visit Study Details | Phase 3 Efficacy and Durability of Ampreloxetine for the Treatment of Symptomatic nOH in Participants With Multiple System Atrophy | ClinicalTrials.gov

If you would be interested in taking part, please speak to your consultant in charge of your MSA care, or to your MSA Nurse Specialist, or contact staff at a study site.

The study is being run at 4 centres in the UK; London, Salford and Birmingham. Please see below for centre contact details.

London, United Kingdom, WC1N 3BG

Autonomic Unit, National Hospital for Neurology & Neurosurgery

Contact: Scott Johnstone scott.johnstone@nhs.net

Salford, United Kingdom, M6 8HD

Salford Royal Hospital

Contact: Study Coordinator: Neuroresearch.nurse@nca.nhs.uk

London, United Kingdom, EC1M 6BQ

Barts Health

Contact: Armida Balawon

020 7882 5669; a.Balawon@qmul.ac.uk

Birmingham, United Kingdom, B15 2GW

University Hospitals Birmingham,

NHS Foundation Trust

Contact: Study Coordinator: neurologyresearchteam@uhb.nhs.uk

Orthostatic hypotension (OH) is a sudden fall in blood pressure that occurs when changing position from lying down or sitting to standing. The part of the brain that controls blood pressure is located in the brain stem. We know that the brain stem is one of the areas affected by MSA, which is why people with MSA can experience orthostatic hypotension.

Currently there are several pharmacological (medicine) and non-pharmacological (practical) measures that are used to manage OH, but often they do not control the symptoms fully, so people may still experience symptoms of OH. These include light-headedness, dizziness, fainting and falls.

This project intends to gather data on the impact of OH on people with MSA under the current standard of care. They would like to hear from patients, carers, and family members, who are willing to contribute their experience.

The data collected will be used towards the establishment of a national clinical guideline aimed to help patients, carers, family members and clinicians in the management of OH. Furthermore, it will provide further insight into existing gaps in treatment and the need for new medications for the condition, some of which are not currently available in UK, but are well established in other countries.

We are asking people to complete an online questionnaire that should take about 15 minutes to complete. If you would like to take part, please email scott.johnstone@nhs.net and a member of the team will get back to you.