An overview of the Swiss Neonatal Network & Follow-up Group (SwissNeoNet)

Abstract

The Swiss Neonatal Network Follow-up Group (SwissNeoNet) started as a paper based standardized data collection for very preterm born infants in 1995 for the purpose of research. It has since evolved into a sophisticated online medical registry with the chief aim of improving the quality of medical care for highrisk newborn infants through research, education and collaborative audit. In support of its aim, it collects primary hospitalization and neurodevelopmental follow-up data of various cohorts of newborns from all level III neonatal intensive care units (NICUs) and all peripheral intermediate care level IIB neonatal units (NUs) in Switzerland. It coordinates clinical, epidemiological and health-services research that provide orientation for Swiss neonatologists on how their performance compares with that of other networks, how different approaches in practices without clear evidence base associate with outcome, or how processes and outcomes evolve longitudinally. Its research also allowed former very preterm born children to express their own perception of their quality of life. SwissNeoNet closely monitors and compares NICUs and NUs and provides the infrastructure for quality improvement collaboratives. All units jointly and openly compare their performance and identify potential for changing clinical practices which has led to several local improvement projects as well as revisions of national treatment recommendations. To collaborate in research, to acquire benchmarks, and to serve as a benchmark, SwissNeoNet is actively engaged in several national and international collaborations. Receiving no governmental support, SwissNeoNet struggles with a limited budget to continuously operate a multifaceted, complex network with an electronically advanced, security sensitive infrastructure. Nevertheless, it plans expanding by connecting closer to the families and ultimately the former very preterm born children in the near future: building a patient reported outcome measure (PROM) repository and thus learning more about the parental/patient perspective will benefit clinical research, qualitative research, quality assessment, long-term follow-up recruitment and may even pave the way to later expand into citizen science and personalized health care.

Health-related quality of life in children and adolescents born very preterm and its correlates: a cross-sectional study

“…Like other studies of very preterm born children, our sample may have had selection bias or selective drop-out [8, 10]. We cannot exclude the possibility that some participants in the Ciao Corona sample were very preterm born as well, as this information was not assessed (1% [23] in a general population). Although this research took place during the COVID-19 pandemic which may have affected HRQOL of the children, this was true for all included groups.…”

Pediatric Trauma and Trauma Team Activation in a Swiss Pediatric Emergency Department: An Observational Cohort Study

“…Despite an initiative by the national pediatric surgery society to introduce such a register in 2011 [ 7 ], this project has not transpired. A PEM-driven solution could be a minimal trauma dataset, similar to the neonatal minimal dataset established by the Swiss Society of Neonatology [ 45 ]. In our cohort, TTA did not correlate with injury severity, and balance between over- and undertriage is a continuing challenge at the prehospital and ED interface.…”

Similarities and Differences in the Neurodevelopmental Outcome of Children with Congenital Heart Disease and Children Born Very Preterm at School Entry

“…Neonatal data and data of the follow-up assessment were extracted from the prospective database of the Swiss Neonatal and Follow-up Network. 21 In Switzerland, children enter a 2-year kindergarten period if they have turned 4 years old by July 31. Consequently, children are at least 6 years old at school entry, but may be up to 7 years old.…”

“…An algorithm implemented in the database of the Swiss Neonatal and Follow-up Network selects the most recently assessed data for every child. 21 Because the vast majority of SES data assessed in the VPT group stem from birth, correspondingly, for the CHD group, SES data at birth were used for further analyses.…”