Transform MS Research:
Smouldering Associated Worsening (SAW) in Multiple Sclerosis (MS)
Welcome to the Transform MS SAW project web page. This is where you can find out more about this research project and, potentially, get involved.
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.
This is where our Transform MS project is designed to help. The aim is 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 we will do through interviews with people who report have SAW. We will have 3 or 4 interviews, over a 4 month period. The interviews can be on-line, by phone or face to face based on what is most practical for the person being interviewed.
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.
If you believe that SAW is a relevant term to describe your MS, you are willing to be interviewed to discuss the impact and changes in your MS, and you are able to communicate in English, please complete the questionnaire at the bottom of this page. A member of our team will then be in touch to give you more information and explain next steps.
This important research is being funded by Sanofi, who are supporting a broader project examining the potential to develop a 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.
Research Overview:
• Aim: To improve understanding of SAW and its impact on MS
• Value of the research: Improved understanding of SAW can support identification and measurement of SAW to improve clinical care for people with MS..
• Type of research: Qualitative - uses interviews and questionnaires.. There is no treatment or delivery of clinical care.
• Participant commitments: 3 or 4 interviews over a 4 month period.
• 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: Interviews can be offered by a digital call (MS Teams), phone or in-person. Whichever is preferable and most practical for the participant .
• Planned outcomes: The research team aim to provide outputs that share important information about SAW and techniques for measuring its impact. Outcomes will be shared with participants and the MS community via publications, conference submissions and study newsletters.
• How do you get involved? Complete the questionnaire below and one of our team will get in touch to explore if the study is relevant to you and advise on next steps.
• 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.