Welcome to the international survey on priorities for research in multiple sclerosis
The Cochrane Multiple Sclerosis Group is running a survey by an online questionnaire collecting your views and ideas about research priorities for systematic reviews on multiple sclerosis.
Before you decide whether to participate, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and feel free to ask us if you would like more information or if there is anything that you do not understand.
Please also feel free to discuss this with your friends, relatives and your physician if you wish. We would like to stress that you do not have to accept this invitation and should only agree to take part if you want to.
Thank you for reading this.
The Cochrane Multiple Sclerosis Group is based in the IRCCS Istituto delle Scienze Neurologiche in Bologna, Italy. We are part of Cochrane, an international , independent, not-for-profit organisation dedicated to producing up-to-date, accurate information about the effects of health care for everyone to access.
About Cochrane reviews
Cochrane reviews are recognised worldwide as providing, ‘Trusted evidence. Informed decisions. Better Health’. They are published in the Cochrane Library.
Cochrane reviews are used internationally by health professionals, health policy makers, and others to plan and deliver best practice in health care. They are also used by many people, to inform their own health care decisions.
Aims of this project
The aims of the project are to identify priorities for research in multiple sclerosis, broadly, and to use this list to identify 6 priority topics for Cochrane Reviews in this area.
Step 1: First online international survey
We are inviting health and social professionals, researchers, people with multiple sclerosis and their carers to tell us their ideas for research topics in multiple sclerosis by participating to an online survey through a short anonymous questionnaire. The survey will be open for participation for two months (until December 13, 2020).
We are asking respondents to choose and rank 3 high priority questions from a list of 16 questions and to tell us the key reasons why they think the questions they have selected are a priority for research in multiple sclerosis. The 16 questions were generated by the project Working Group and Steering Group.
Respondents can suggest additional free-text priority research topics that they think are missing from the list of 16 questions.
At the end of the survey we will start working on the first three Cochrane reviews, that will be produced on the 3 top-ranking priority questions, based on the preferences by the survey respondents.
The remaining questions and more additional questions suggested as free-text by the respondents will be grouped and consolidated into a new list that will be used in the second survey.
Step 2: Second online international survey
We will conduct a second online survey by means of an anonymous questionnaire.
Again, we will ask people to choose from a list and rank the questions that they think are high priority, according to their relevance, benefit for people with multiple sclerosis, expected impact on research and clinical practice. The second survey will take place in the first quarter of 2021.
At the end of this second survey, three more top priority questions will be identified after the respondents’ ranking and will become the subject of three more Cochrane systematic reviews.
Why have I been invited to take part?
We are inviting to the survey people with experience of multiple sclerosis, such as: people with multiple sclerosis, their carers, family members, researchers and healthcare professionals (such as nurses, allied professionals and doctors).
What will happen if I take part?
Taking part will mean that you will read and respond to an online anonymous questionnaire.
In the survey, you will also be asked to share your views and ideas on top research priorities for people with multiple sclerosis.
Participation to the survey will include 4 steps:
- Rank your 3 top questions among the list of 16 you will find in the questionnaire
- Tell us more about your choice (key reasons why you think the questions you chose are important)
- Add other questions or topics and tell us more
- Tell us about you and submit
How will my data be used?
Your response will be used to inform prioritisation of research topics for systematic reviews.
The online questionnaire is anonymous; we will not ask for personal, identifiable information (for example, we will not ask name, address or information about your health).
The second round of the survey will take place in the first quarter of 2021. If you wish to participate to the second round of the survey, please check this page and our website: we will timely advertise it.
Expenses and / or payments
The participation to the survey is free of charge. No payment is offered to respondents.
What will happen to the results of the study?
The results of the first and second survey will be made publicly available on the Cochrane Multiple Sclerosis review group website.
What if I am unhappy or if there is a problem? Who can I contact?
If you are unhappy, or if you think there is a problem, please feel free to contact us and we will try to help.
Dr Francesco Nonino
Dr Graziella Filippini
Neurologist, Affiliated Researcher, Cochrane Review Group Multiple Sclerosis and Rare Diseases of the CNS, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy
Maria Grazia Celani
Neurologist, Cochrane Neurological Sciences Field. Multiple Sclerosis Outpatient Centre. Azienda Ospedaliera di Perugia, Perugia, Italy
Professor of Statistics, Department of Medical and Surgical Sciences. University of Modena and Reggio Emilia, Modena, Italy. Senior Co-ordinating Editor Cochrane Review Group Multiple Sclerosis and Rare Diseases of the CNS.
Neurologist, Senior Co-ordinating Editor Cochrane Review Group Multiple Sclerosis and Rare Diseases of the CNS, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy
Coordinator, Cochrane Neurological Sciences Field. Welfare Regione Umbria, Perugia, Italy
Neurologist, Joint Co-ordinating Editor Cochrane Review Group Multiple Sclerosis and Rare Diseases of the CNS, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy
Dr Ben Ridley
PhD in Neuroscience, Managing Editor Cochrane Review Group Multiple Sclerosis and Rare Diseases of the CNS, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy
Dr. Cinzia Colombo
Laboratory of Research and Consumer Involvement, Department of Public Health, Istituto Di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy
Professor of Neurology, Blizard Institute, Barts and the London School of Medicine and Dentistry. Queen Mary University of London, London, UK
Director of Rehabilitation. Department of Rehabilitation Medicine Royal Melbourne Hospital, Royal Park Campus. Melbourne Victoria, Australia
Dr Sascha Köpke
Professor of Nursing Science, Institute of Nursing Science. University of Cologne, Cologne, Germany
International Consultant - Access to Treatment, MSIF (Multiple Sclerosis International Federation), Hong Kong
Lay Member, Perugia, Italy
Carolyn A Young
Consultant Neurologist and Honorary Professor of Neurology. The Walton Centre NHS Foundation Trust, Liverpool, UK