Transform MS Research:
Identifying and measuring change in Multiple Sclerosis:
The SAW Index Study
Welcome to the Transform MS SAW Index 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 critical 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. These interviews emphasised the importance of having improved measures that cover a wide range of gradual change in specific symptom areas common in people with MS.
This led to the development of new questionnaires to support the identification and measurement of MS that reflect these requirements. Whilst these will be relevant for people with SAW-MS, they will also be of potential value to all people with MS. The questionnaires also use specific examples and words describing 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 a six-month period about the identification and the measurement of change in MS over time. Each questionnaire we issue will cover specific symptom areas (for example Cognition, Walking etc) and you will be able to choose how many you want to complete - it is completely optional. The more people who answer our draft questionnaires the more valuable our data will be, all helping to improve the quality of the questionnaires.
We are looking for participants, over 18 years of age, with any type of MS. This is important as we will use the completions to identify the value of the questionnaires to different MS clinical profiles. Please note at this stage of our research project we will are only able to provide questionnaires in English, a planned next phase will issue the questionnaires in different languages and across multiple countries.
Summary information about the study is provided below. However, should you be interested in taking part we will provide more detailed information about what is involved and how we will use data collected so you can decide if you would be willing to complete the questionnaires.
How to get involved
The next stage of the study will be launched in the coming weeks. When it is we will provide a direct link here to the secure site we use for providing our surveys. In the meantime if you are interested in potentially getting involved please complete the enquiry form at the bottom of the page. We will then contact you once the surveys are launched and explain the steps to enrol in the study.
We really appreciate your interest.
Research Overview:
• Aim: To design tools for improved identification and measurement of change in MS and increase understanding of Smouldering Associated Worsening in MS and its specific impacts.
• Value of the research: Improved understanding of SAW and the development of new tools for the identification and measurement of MS that 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 symptom areas – approximately 1 per week on average over a 6-month period. There is no obligation to answer all questionnaires.
• Research team: Experienced research team led by Professor Jeremy Hobart. Consultant Neurologist Specialist in MS and Honorary 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? Complete the enquiry form at the bottom of this page and we will contact you once the study is launched and the next steps to enrol in the study.
• 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.