Open MSA Studies
Use the tabs to find out more about each research study.
You can also search for open studies on the NIHR website
Use the tabs to find out more about each research study.
You can also search for open studies on the NIHR website
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.
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 this study, please contact:
Riona Fumi, Prospect Coordinator
Email: Riona.Fumi.20@ucl.ac.uk
Telephone: 020 3108 2838
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:
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
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.
More information about the trial is available on the Clinicaltrial.gov webpage
About ATH434: The development of alpha-synuclein MSA pathology has been linked to abnormal deposits of iron, which can be shown on brain scans of people with MSA. The drug ATH434 has been shown to improve measures of brain injury in animal models of MSA, and is now being trialled in a phase 2 trial in people with early MSA (less than 4 years of symptoms). This is a placebo-controlled trial which will examine the effects of ATH434 on brain iron deposition and clinical measures. The trial is being run at several UK specialist MSA centres, and it is hoped that up to 3 centres will be recruiting to the study over the coming months.
Please contact your MSA Nurse Specialist to discuss further.
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
Tell us about your experiences of telephone communication with speech that may be difficult to understand
What is the study?
Nowadays companies are replacing physical offices with call centres and call centres with automated voice recognition “agents”. These services are not always easy to access especially when you experience difficulties with your speech. Therefore, we are conducting a study to explore how the accessibility of telephone communication with companies, call centres and hotlines can be improved for people with a speech disorder.
Who can take part?
To take part the following also has to be true for you:
You are over 18 years old and you have acquired a speech disorder as an adult, affecting your voice or pronunciation. You can carry out a conversation and you have called a company, customer service, or a hotline on the phone at least once in the last year. You are comfortable speaking in English. You don;t have hearing loss greater than 30dB of both ears.
What does it involve?
We will invite you for a video call or an in-person interview with a member of the research team to discuss some of your experiences. The discussion will take up to 30 minutes and your responses will be kept confidential. You will receive a £10 gift card as a thank you at the end of the interview.
Get in touch!
This study is organised by researchers at the University of Strathclyde. If you are interested in taking part or would like to have more information, please contact Dr Maria Dokovova by email maria.dokovova@strath.ac.uk or through telephone 07719101054.
Download the study flyer and participant information sheet using the buttons below.