The GAPS Project: Securing a Shared Vision for Sudden Unexpected Death in Infancy
Summary of work
Sadly, sudden unexpected death in infancy (SUDI) remains a leading cause of postneonatal mortality in many countries, causing unbearable loss and pain. Its causes remain elusive and high quality research is vital to identify ways to prevent SUDI. However, a lack of cohesion within SUDI research was likely hindering progress. The international SUDI research community lacked a shared vision for targeting areas most likely to make an impact. To address this, The Lullaby Trust, in collaboration with the International Society for the Prevention of Perinatal and Infant Death, American SIDS Institute, Red Nose in Australia and an independent health policy consultant, led a groundbreaking project to agree the top SUDI research priorities. Around 700 people from 25 countries took part, including professionals from 17 disciplines and bereaved family members. Through a combination of online surveys, and workshops held in the UK, US and Australia, the Global Action and Prioritisation of Sudden infant death (GAPS) project achieved consensus on the top ten research priorities. Findings were published in a high impact journal and widely cited, and have already informed the agendas of three funding organisations. The SUDI community is now better networked with a shared vision that will ultimately prevent deaths.
The judges felt there was a lot to like in this entry – its impressive scope of partnerships, good impact and strong research. It genuinely made a different and is an amazing achievement that will shape the landscape of patient focused research.