As well as medicinal clinical trials, there is the opportunity to be involved in other research studies occurring around Australia. These are sometimes open to family members of those who have been affected by MND. See below for details.
Active, currently recruiting patients
Location: Liverpool Hospital (Sydney)
Liverpool Hospital (Sydney) offers a state of the art Communication and Assistive Technology Clinic for those diagnosed with MND and living within the SWSLHD. This project aims to identify if assessment and intervention within the Communication and Assistive Technology Clinic within 12 months of diagnosis improves quality of life, function and decreases carer burden. Participants will complete surveys and interviews in addition to standard care by specialised Occupational and Speech Pathologists.
Researchers within the Sydney South West Local Health District (SWSLHD) are collaborating with The University of Sydney and The University of Technology, Sydney to recruit volunteers to participate in a research project for people living with motor neurone disease. The project will examine the use of Augmentative and Alternative Communication (AAC), such as electronic tablets, switches or eye gaze, in improving the quality of life for people living with MND and their carers. The use of Environmental Control Units (ECU) to control technology such as television and air conditioning will also be examined.
The aim of this project is to identify whether assessment and intervention within the Communication and Assistive Technology clinic within 12 months of MND diagnosis improves quality of life and function, and decreases carer burden.
To be involved in this study you need to have a definitive diagnosis of MND, with diagnosis within 12 months of the baseline assessment. Participants must be aged over 18, reside in the South Western Sydney Local Health District and be able to communicate in English. Participation involves completion of surveys at the beginning and end of your involvement with the study, a trial period of suitable adaptive technology and a 30 minute interview at the completion of the trial. There are no costs associated with this study. Participation is voluntary and you can withdraw from the study at any time. See this pdf for more information.
Alicia Gibb, Manasi Thornley or Monique Signorelli
South Western Sydney Local Health District Communication and Assistive Technology Clinic, Liverpool Hospital
02 8738 4701 or 02 8738 4702
Active, currently recruiting patients.
Location: Macquarie University
Scientists at Macquarie University are searching to find the causes of MND. As part of this research, data and biological samples are being sought for the Neurodegenerative Disease Biobank. This study aims to screen for environmental risk factors and their potential association with MND in Australia, specifically in the agricultural Riverina Region. A number of groups are being sought from the region: patients with an MND diagnosis; people living in the same household as a person diagnosed with MND in the last ten years; or people who have lived in the region for at least ten years in the past, but have since moved away. All participants will be required to provide a urine sample and answer a questionnaire.
See this pdf for more information, or contact Susan D'Silva on 02 9812 3741
Active, currently recruiting patients and family members of those with MND.
Interview is conducted by telephone, video conference, email or online text chat/instant messaging.
Genetic testing is becoming more widely available for people with motor neurone disease (MND). Currently, not everyone with MND is offered genetic testing, but this may change in future. This project is inviting you to participate in an interview by telephone, video conference, email or online text chat/instant messaging if:
This project hopes to learn more about your experience of genetic testing for MND and to gather suggestions for improving experiences for others in future. This research will help us to better understand how genetic testing is provided for people with MND, and how this experience can be improved. This information is hoped to be used to create guidelines specific to genetic testing and counselling for people with MND.
This study is part of a PhD project and has been approved by the Human Research Ethics Committee, University of Technology Sydney (Approval no. ETH20-5122)