Spinal Cord Injury Priority Setting Partnership (SCI-PSP)

The SCI-PSP has offered a unique opportunity for people with experience of spinal cord injury (SCI), Cauda Equina Syndrome and Transverse Myelitis to help shape future research in these areas. Carers, health and social care professionals and those who have an associated interest in SCI were also invited to take part in this exciting project – please read on for more details, including the all-important ‘Top 10’ research priorities that the PSP identified.

This hugely significant piece of research followed a lengthy process:

  • Bringing together all Stakeholders:

The SCI-PSP steering group made up of people with spinal cord injury, carers and healthcare professionals first met in April 2013.

  • Question gathering:

A large scale survey was conducted between September and December 2013 for anyone with an interest in spinal cord injury to submit potential research questions.

  • Sorting: Questions gathered in the previous stage were sorted and grouped into topic areas by the SCI PSP Information Manager, then checked against previous research to see if they had already been answered.
  • Prioritising: Once all questions and true uncertainties had been gathered and sorted, a second Survey was launched to identify which of all these questions were most important to those with an interest in spinal cord injury.  This Prioritisation Survey was conducted between 22nd April and 31st May 2014.
  • Narrowing down to a ‘Top 10’: A Final Prioritisation Workshop to discuss and rank the top 25 questions from the survey was held on Saturday 5th July 2014. Attendees, including people with spinal cord injury, carers, patient representatives and healthcare professionals were able to express their views, hear different perspectives and think more widely about spinal cord injury to ultimately identify the 10 most important research questions.
  • Announcing the Results: the ‘Top 10’ research priorities were formally announced on 1st October 2014 and published in the Lancet Neurology in December 2014.

To view the all-important ‘Top 10’ priorities that will shape future SCI research click the button below:

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View the published results here