SMA Priority Setting

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


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 will involve a number of steps...

  1. Question gathering: People asked to submit their key research questions. A survey is planned, which will be reviewed by a group of people with SMA, their carers and health care professionals.
  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.


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.

Who will be involved?

  • People living with SMA, their carers and the healthcare sector
  • The James Lind Alliance
  • Our Steering Committee
  • Our advisor and our staff 
  • Our partners



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