What are the benefits of taking part in MS research?
Taking part in research studies can be a very empowering experience. Not only can it connect you with medical researchers and health professionals, it is an opportunity for you to help others too by contributing to the development of new treatments and services for everyone living with MS.
How you can get involved…
Despite the current pandemic, the good news is that MS research is still happening and there are a number of studies that you can take part in from the comfort of your own home. These include online surveys, phone interviews, or studies such as home-based exercise programs.
MS Research Australia hosts a Clinical Trials Network website that lists MS clinical trials and research studies in Australia that the MS community can participate in, and many are looking for participants at the moment. Please visit mstrials.org.au for a complete list of trials currently recruiting in Australia.
In the meantime, here is a selection of research studies that you can take part in during the COVID-19 pandemic.
Floodlight Open: a research study to assess the tracking of MS using smartphones
MS is a varied disease that can cause a broad range of symptoms – this can make tracking and measuring symptoms very challenging. The aim of this study is to determine whether smartphones can be used to collect information potentially related to MS over time, as well as determine the factors that impact adherence to smartphone technology. Ultimately, the study aims to determine the feasibility of such data collection from people with MS in a real-world setting. Each person that takes part in this study contributes to a unique and open dataset that is aimed at moving MS research forward.
Participants with a smartphone will be asked to download the Floodlight Mobile Application. This includes active tests that prompt and guide the user to perform various assessments such as patient reported outcomes (daily mood question), hand motor function, gait (walking ability) and posture, and cognitive (thinking and memory) tests. The app also includes software that allows for “passive monitoring”, which will collect information on mobility throughout the daily life of participants in a continuous and unobstructed manner.
This study is recruiting both people with MS and without MS. Find out more here.
Understanding the needs for smoking cessation in people with MS
Tobacco smoking is associated with worse health outcomes for people with MS, including depression, anxiety, disability, conversion to secondary progressive MS and increased chance of other health problems. It is not known whether people with MS are routinely asked about their smoking behaviour, and whether smokers with MS get the help they need to quit. Also, it is not known whether people with MS are aware that smoking worsens their MS, and how and if they want to receive help to quit.
Dr Claudia Marck and her team at the University of Melbourne are carrying out an MS Research Australia funded project ‘Understanding the needs for smoking cessation in people with MS’, alongside researchers from Swinburne University and Cancer Council Victoria.
People with all forms of MS, including clinically isolated syndrome (CIS), are invited to take part in an online survey asking questions about smoking, passive smoking and nicotine products. Even if you have never smoked, your responses will help to improve services for people with MS who do smoke. The overall aim of this study is to understand the best way to guide MS clinicians to assess smoking behaviour and help people with MS to successfully quit smoking. Ultimately, the goal is to bring smoking rates down and maximise health outcomes in people with MS.
The survey will take between 10-20 minutes to complete. Find out more here.
MS JobSeek: harnessing peer support to help job seekers with MS find employment
Australians with MS can experience many challenges in finding and maintaining employment, but people who share their experience of living and working with MS can promote self-management and empowerment, and help other people with MS move into work. Peer mentoring can also be a mutually beneficial relationship – participants who serve as peer leaders gain knowledge, skills and self-confidence.
MS Research Australia funded researchers from the University of Adelaide are working on ‘Peer support to help jobseekers with MS find employment’ and have developed an online forum, MS JobSeek, led by employed people with MS and overseen by a health psychologist. In this forum, people share their work experiences and help motivate and encourage people with MS to explore work and study options. This is also supplemented with educational material to help participants better understand the current job market.
The researchers will determine whether MS JobSeek is effective in supporting return-to-work progression for people with MS. The findings from this study will help generate new evidence on how job seekers with MS engage with, and respond to, peer mentoring. It will also help provide a framework for how peer support services might be run and optimised in vocational care.
More studies that you can take part in from home