Transform MS Research:
Smouldering Associated Worsening (SAW) in Multiple Sclerosis (MS)
Welcome to the Transform MS SAW research study web page. This is where you can find out more about this research project and, potentially, get involved. Support from the MS community is important for the project’s success.
Project overview and current position
Smouldering Associated Worsening (SAW) in Multiple Sclerosis is a term increasingly used in MS clinical discussions. The term SAW is used for patient-reported disease worsening in the absence of clear relapses or new MRI activity showing increased inflammation. As an emerging concept it is important for the MS community to develop its understanding of SAW to inform clinical care.
Transform MS CIC has completed a pilot study undertaking qualitative (interviews) research to improve understanding of the clinical impacts of smouldering disease, the specifics of exactly what is affected and exactly how these manifestations change over time from the perspective of people with MS.
This led to the development of preliminary questionnaires to support the identification and measurement of MS that is relevant for people with SAW-MS, and likely other forms of progressive MS. The key focus is on a broad range of symptom impacts and capturing subtle but impactful changes. The questionnaires also aim to use specific examples of impact shared by people with MS rather than more ambiguous terms. These have been developed using our existing study cohort of 48 people with MS from across the world.
Next stage of our research
The next stage of the research is to undertake a bigger study with more participants completing a range of questionnaires over about a six-month period about the identification of SAW MS and the measurement of change in SAW MS over time. The more people who answer our draft questionnaires the more valuable our data will be, all helping to improve the quality of the questionnaires.
Summary information about the project is provided below. We will provide more detailed information about the project, what is involved and how we will use the data to anyone who expresses an interest in being involved.
How to get involved
If you want to help with this study, we are looking for participants, over 18 years of age, with any type of MS. Whilst the questionnaires are mostly targeted at people with SAW-MS, and other forms of MS characterised by gradual worsening, completion by all with MS will help identify the strengths and weaknesses of the questionnaires. Please note at this stage of our research project we will are only able to provide surveys in English, a planned next phase will issue the questionnaires in different languages across multiple countries.
Please click on the QR code or link to a questionnaire at the bottom of this page which will explain exactly what is involved and guide you through the next stages.
Research Overview:
• Aim: To improve understanding of SAW and its impact on MS and design tools for its identification and measurement.
• Value of the research: Improved understanding of SAW and new tools for the identification and measurement of SAW can improve clinical care for people with MS and research into new treatments and other interventions.
• Type of research: Qualitative and quantitative - uses interviews and questionnaires. There is no treatment or delivery of clinical care.
• Participant commitments: to complete a range of optional questionnaires in specific symptoms – approximately 1 per week on average over a 6-month period. There is no obligation to answer all.
• Research team: Experienced research team led by Professor Jeremy Hobart. Consultant Neurologist Specialist in MS and Professor of Clinical Neurology and Health Measurement. Professor Hobart is Chief Scientific Officer at Transform MS CIC.
• Location: All questionnaires can be completed on a desktop, laptop, phone or tablet from wherever the participant is.
• Planned outcomes: The research team plan to increase understanding of SAW-MS and to provide new tools that can be used to identify and measure impact of subtle changes in MS to improve clinical care and research. Outcomes will be shared with participants and the MS community via publications, conference submissions and study newsletters.
• How do you get involved? Follow the link below to our research platform this will assess if you can get involved and explain the next steps if you want to find out more.
• Who has funded and organised the study? Sanofi is funding the development and study of the SAW Index. Members of the SAW Index steering committee include Jennifer Graves, Fred Lublin, Gavin Giovannoni, Jiwon Oh, Tjalf Ziemssen, Joep Killestein, Melinda Magyari, Jose Manuel Garcia Dominguez, Lukas Cepek, and Jeremy Hobart.
SAW Index Study Research Outputs
There has been a lot of interest in the SAW Index Study across the MS community. The Transform MS team have presented information about the study at multiple events ranging from international conferences such as ECTRIMS to local MS Society meetings. We have created a page to share the outputs that have been created, as time progresses this will include published manuscripts as well as additional conference posters.
Click on the SAW Index Outputs button to have a look at the current outputs.