Have Your Say in Setting Research Priorities

Setting MS research priorities

The UK MS Society is leading a project to put people with MS at the centre of setting 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.

Help them and Have Your Say.

This is Open to Academics, Neuros and MSers

Help the MS Society prioritise future MS research

They do not like my suggestion of giving it all to us

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) the MS Soceity will be changing the way they 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 patients, carers and health care professionals such as nurses and neurologists to do this.

They hope to gather 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.

Why are we doing this?

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.

The hope is that these top 10 priorities will guide other research funding bodies, as well as our own research programme.

How can You get involved?

Do you have an unanswered question about the prevention, diagnosis, prognosis or treatment of MS?

They need people with MS to share questions about what affects their MS and their life. We also need carers of people with MS to tell the MS Society what is important to them and the people they care for.

We need health care professionals who work closely with people with MS, such as neurologists and MS specialist nurses, to use their experience to submit questions that are important to treating and supporting people with MS.

Stand back I can see Prof Gs head doing overtime

Tell them your questions

The survey is open. Details on how to submit can be found in the information sheet.

Look out for opportunities next year to vote for the questions and to be part of the group who narrow down the number of questions.

The process

The JLA will work with the MS Society until they 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.

Reviewing existing research. The project steering group will review previous research, such as literature reviews or treatment guidelines, which may have identified important questions. These will be included along with questions gathered in the survey.

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 March 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 April 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.

You can read more about the process of partnership in the priority setting partnership protocol.

Steering group

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, 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 – Specialist MS nurse

Richard Nicholas – Consultant neurologist, London