The purpose of this project is to identify which areas of research are believed to have the most potential to reduce further the number of sudden unexpected infant deaths (SUID/SUDI) around the world in the next 10 years. The aim is to use this information to guide future funding towards answering the research questions that will make the most impact on preventing SUID.
Stage 1: Open-ended survey
An open-ended survey was distributed to the ISPID member mailing list and other selected clinicians, researchers, charities and bereaved parents from around the world asking the following questions:
Thinking first about your own area of experience or expertise:
- What are the big gaps in our knowledge about sudden unexpected infant death (SUID)?
- What are the key ways in which the field could make progress in this area?
- What are the challenges that must be overcome?
Now thinking more broadly about existing research into understanding and preventing SUID:
- What else could be done to move the field forward?
- How would this help reduce SUID?
This survey was live on Survey Monkey for three weeks in June 2015. A total of 75 complete responses were received from 20 countries around the world.
Stage 2: Analysis of research suggestions
From this initial survey 276 individual comments on gaps in our knowledge and suggestions for how to best address SUID were gathered. Duplicates were excluded and the remainder were grouped into themes. A literature review was conducted in July 2015 to confirm the feasibility of each suggestion and ensure it had not already been addressed in prior research.
Stage 3: Research prioritisation survey
Research suggestions confirmed by the literature review were refined into specific statements and programmed into a second survey. This survey was live for four weeks in October-November 2015, during which time hundreds of people with personal or professional experience of SUID from around the world voted on which of the statements had the most potential to further reduce SUID.
Stage 4: Final prioritisation workshops
Following the research prioritisation survey, the GAPS steering group used the survey results to refine the list of research statements into a shorter list.
In November and December 2015, three workshops took place in the UK, US, and Australia to build consensus on which of the shortlisted research statements have the most potential to reduce the rate of SUID. Made up of researchers, clinicians, bereaved family members and other professionals, the groups worked together to refine the list and build consensus on the final research priorities.
Stage 5: Dissemination of top research priorities
In spring 2016 the results of the final workshop were summarised in a paper for publication. This paper has been published here. Further information about the project is available from Lullaby Trust's website.