SMA Priority Setting

"Putting people
living with SMA
at the heart of
our research programme"

Overview

Setting research priorities

SMA Europe has partnered with the James Lind Alliance to identify the top 10 unanswered research questions on SMA from people living with the condition, their caregivers and healthcare providers.

This initiative involves a number of steps:

  1. Question gathering: People are asked to submit their key research questions by way of a survey.
  2. Sorting: The questions will be grouped into topic areas and questions that have already been answered will be removed.
  3. Prioritising: The remaining questions will be sent to people living with SMA, to identify those most important to them.
  4. Narrowing down to 10: A group of people with SMA, family members and health care professionals will be invited to take part in a workshop and asked to narrow the most voted for questions to our top 10.

The Aim

Why this Priority Setting initiative?

By hearing the research priorities of our community, we can inform our research programme, push other funders, scientists and service providers to recognise the views and needs of those living with SMA and get their questions answered.

We are committed to funding high quality research that answers the key questions we have as a community. We are doing this in a number of ways already, including funding new research projects every other year through our Call for Research Proposals.

The scope of the SMA PSP is on living with SMA, its management and care, as well as treatments. Excluded from the scope are diagnosis and newborn screening.

Who is involved?

The project is led by our Research Programme Manager, with the help of a James Lind Alliance advisor and an Information Specialist. 

The project’s steering group is composed of people who live with SMA, their carers, an ENMC representative, SMA Europe advisors and relevant health and social care professionals - a neurologist, two physiotherapists, a clinical dietician, a speech and language therapist and a clinical neuro-psychologist.

  • The James Lind Alliance
  • Our Steering Committee

This project is funded by SMA Europe.

Priority Setting Team

Roadmap

Milestones

1st Survey

  • Launch date of 1st survey: Tba
  • Closing date of 1st survey: Tba

2nd Survey

  • Launch date of 2nd survey: Tba
  • Closing date of 2nd survey: Tba

Social Media

  • Hashtag: #SMAPSP