I wonder how many people who have not had the traumatic experience of caring for a premature baby have ever heard of necrotising enterocolitis?
Necrotising enterocolitis, or NEC for short, is a severe bowel disease affecting mainly premature babies. For those affected it can be devastating – babies often become extremely unwell, up to one third need an operation to remove the affected bowel and, sadly, some infants do not survive. Then there are the longer term consequences – a high need for further surgery in the first year of life, a high chance of having developmental problems later in life and, as if that wasn’t enough, a real chance of not surviving to get out of hospital or to reach the age of 1 year.
Despite many advances in neonatal care over the past 20 years, the incidence and outcomes of NEC have not improved as much as they should and the disease remains relatively unknown outside neonatal baby units. A number of organisations are doing their best to change this, including SIGNEC and the US-based NEC Society, but we will only shed light on this dark subject if we can get more people together to work out what causes the condition and how to reliably determine when an infant has it. SIGNEC meetings first brought together experts from around the world to discuss the latest research and quality improvement programmes, and in April 2017 the NEC Society held its first meeting in conjunction with the Critical Path Institute’s International Neonatal Consortium NEC Workgroup. This found that the lack of a robust, universally accepted case-definition is a significant barrier to progress in investigating pathogenesis and improving efforts to prevent and treat the disease. The NEC Workgroup will soon publish a White Paper about the challenges associated with the development and licensing of products for the prevention and treatment of NEC and its proposed case-definitions will be the focus of presentations and a workshop on the first day of the SIGNEC meeting in London in October (Monday 29 and Tuesday 30).
Getting an internationally agreed upon case-definition and validated biomarkers for NEC is really important if we are to design the high quality research studies that are so desperately needed to prevent NEC and improve outcomes. Neonatologists, surgeons, nurses and researchers have all had times when we have argued whether an infant had NEC, sepsis or SIP (Spontaneous Intestinal Perforation), and, because we have no biomarkers or definitive tests, we have been forced to make judgement calls. At this year’s conference, we need as many people as possible to share their experiences and debate the proposed case-definitions so that we can significantly reduce those judgement calls. This is our best opportunity so far to coordinate international definitions, to clean up our data sets and, with your help, to make major inroads into this complex disease.
Neonatologists, surgeons, nurses and researchers have all had times when we have argued whether an infant had NEC, sepsis or SIP…
So please share this message widely, come to #SIGNEC18, and encourage your colleagues to attend as well. With a packed, focused program and enjoyable evening social event it is a valuable opportunity to meet and engage with international researchers and experts as well as to make sure you can have your say in how we define and fight an illness that terrifies those of us who have heard of it.