Help us set research priorities
It is crucial that research into MS answers the questions that are most important to people affected by MS.
This project aims to find the top 10 unanswered questions in MS research.
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- Help us prioritise MS research
- Why are we doing this?
- The process
- Steering group
- Partners and supporters
Our survey to find out your top priorities for MS r
In July the most popular questions will be taken forward to a workshop and narrowed down to the top 10.
Until now, there has been an almost limitless choice of potential MS research projects to fund.
This year the MS Society plans to change this. In partnership with the James Lind Alliance (JLA) we will be changing the way we set MS research funding priorities.
The JLA is an internationally recognised, independent, non-profit organisation who will help identify and prioritise unanswered research questions in MS. They specialise in bringing together people with health conditions, carers and healthcare professionals such as nurses and neurologists to do this.
We hope to gather and prioritise unanswered research questions in MS that are important to all of these groups. This could include any area of MS, including treatments for a particular symptom or support for day-to-day life with MS. The JLA will guide this work to produce an unbiased result.
The field of MS research is vast, as is the number of projects that could be funded.
It is essential to identify clear research priorities, for ourselves and other funding bodies, so we can support the most important research and make the most out of the money we spend.
People affected by MS are at the heart of everything the MS Society does. The research we fund should answer the questions which are most important to them.
This approach has already produced clear results for other conditions such as type 1 diabetes, prostate cancer and schizophrenia. Priorities identified in this way are now becoming funded research studies.
Our hope is that these top 10 priorities will guide other research funding bodies, as well as our own research programme.
The JLA will work with us until we find the top 10 unanswered questions in MS research.
- Question gathering. A steering group made up of people with MS, carers and healthcare professionals will oversee a large scale survey to collect questions from anyone who has an interest in MS.
- Sorting. Questions gathered in previous stages will be sorted and grouped into topic areas by the JLA team, then checked against previous research to see if they have already been answered.
- Prioritising. In April 2013, people will be able to vote for the questions most important to them. This stage will reduce the amount of questions to a manageable number.
- Narrowing down to 10. A small workshop to discuss the questions will be held in July 2013. Attendees will express their views, hear different perspectives and think more widely about MS to ultimately identify the 10 most important questions.
We will communicate the 10 questions widely, and encourage researchers to work to answer them.
Ultimately we hope to be able to share these answers with the MS community as soon as possible, to make a difference to the lives of people affected by MS.
Not all submitted questions will become a research priority, but we won’t rule out suggestions and grant applications outside of these priorities.
The MS Priority Setting Partnership will be managed by a steering group, led by an independent chair from the James Lind Alliance.
The steering group includes people with MS as well as representatives of patient/ carer groups and clinicians.
- Sally Crowe – James Lind Alliance (Chair)
- Karen Chong, Roger Bastow, Gwen Covey-Crump, Paul Bull – MS Society members (people with MS)
- Nick Rijke, Ed Holloway, Susan Kohlhaas, Mital Patel – MS Society Research Team
- Grace Hazlett – UK MS Specialist Nurses Association
- Neil Kemsley – Chair, MS National Therapy Centres
- Waqar Rashid – Association of British Neurologists
- Richard Warner – MS nurse consultant, Gloucestershire Hospitals NHS Foundation Trust
- Richard Nicholas – Consultant neurologist, Imperial College Health Care NHS Trust
Read the minutes from the first steering group meeting held in July 2012 at MSNC.
UK MS Specialist Nurses Association
MS Therapy Centres
Association of British Neurologists
The Partnership and the priority setting process will also be supported and guided by:
Ann Daly – Independent Information Specialist
Sally Crowe – The James Lind Alliance
Mark Fenton – UK DUETs