The Swiss Neonatal Network & Follow-up Group (SwissNeoNet) started collecting data on very preterm children in 1995. Initially this was done on paper. Over time the network developed into a modern, online medical registry whose goal is to improve the quality of care for vulnerable newborns through research and collaborative audit. To achieve this, the registry collects data on the birth and primary hospitalization period of newborns as well as on their neurological development.

This includes children treated in neonatal intensive care units (NICUs). These so-called level III units provide intensive care for particularly vulnerable or very premature babies with comprehensive equipment. Peripheral units (so-called level IIB unit) that offer intermediate care for sick infants not requiring intensive care, also participate in SwissNeoNet.

SwissNeoNet coordinates studies on the health and care of premature babies and helps doctors in Switzerland to compare the quality of their work. This makes it possible to understand the effects of different treatment approaches and processes on the children's outcomes and to observe changes over time. Former premature babies can now also evaluate their own quality of life through research. SwissNeoNet analyses and compares the data from the intensive care units and peripheral wards and supports quality improvement projects. All departments work together openly to evaluate their results and find possible optimizations. This collaboration has already led to a number of improvements and adjustments to national treatment guidelines.

In the future, SwissNeoNet plans to take the perspective of parents and formerly very premature children more into account. To this end, it plans to set up a platform on which parents and patients can themselves state how they experience their health (PROM - Patient Reported Outcome Measure). The findings from this should enrich research, quality assessment and long-term follow-up and could open up new paths to citizen science and personalized healthcare.

SwissNeoNet is involved in numerous national and international projects and serves as a benchmark for other networks. Since the network operates without government support, the complex system is operated on a limited budget - including a modern and security-oriented electronic infrastructure.
Read publication

Compared to children born at term, children born prematurely are at a higher risk of neurological developmental disorders. Since no report on neurological development with a focus on cognitive abilities has existed in Switzerland to date, this was investigated in this study.

In 2006, all children born before the 30th week of pregnancy were invited to participate in a study. The aim was to measure cognitive, motor and sensory impairments. The need for early intervention and therapy was also evaluated.

Of a total of 289 survivors, 235 were examined, with the following results:

- cognitive impairment (21%)

- short-term memory impairment (40%)

- cerebral palsy (6%)

- visual (15%) or auditory impairment (5%)

Overall, 63% survived without impairment. The majority of children showed promising results; however, cognitive impairments were particularly noticeable in short-term memory. Overall, our results are similar to those of international cohorts and suggest that children born before 30 weeks of gestation, especially those from disadvantaged social backgrounds, are at increased risk for cognitive impairment and require closer monitoring.

Read publication

In countries with well-resourced health systems, complications of preterm birth are the leading cause of mortality in children under five years of age. This study compares data from eight members of the International Network for Outcome Evaluation (iNeo) to compare mortality and morbidity in extremely preterm birth internationally and to analyse their trends. These eight participating countries (Australia/New Zealand, Canada, Israel, Japan, Sweden, Switzerland and the United Kingdom) included a sample of 58,004 infants with a birth weight of less than 1500 g born between 24 and 31 weeks of gestation. A composite outcome (mortality or severe periventricular hemorrhage, periventricular echodensity/echoluncence, bronchopulmonary dysplasia or treated retinopathy of prematurity) was compared between countries.

a) Mortality rate: The overall mortality rate was 10% (Japan: 5%, Spain: 17%).

b) Combined morbidity rate (mortality and morbidity): Despite differences in population coverage, the newborns included were similar across countries, with overall combined outcome rates varying from 26% (Switzerland) to 42% (UK).

c) Specific diseases:

- Bronchopulmonary dysplasia: The incidence was highest in the UK at 32%, while in Israel, Spain and Switzerland it was around 15% or less.

- Neurological damage: This was more common in Canada, Israel and Spain (over 10%), while the other countries were below.

- Retinopathy (treatment): Japan had the highest rate of premature babies requiring treatment for retinopathy (16%).

The study concludes that international cooperation must be intensified to reduce existing differences in care.

Read publication Go to iNeo

In this retrospective cohort study, premature infants under 28 weeks of gestational age in Switzerland who were born between 2012 and 2017 were examined. The outcomes were compared between surgically ligated and medically treated infants and between centers with ≤10% and >10% surgical ligation. Propensity score matching was performed based on case mix and preoperative influencing factors such as intraventricular bleeding, necrotizing enterocolitis, sepsis and long-term oxygen requirement.

Of 1389 infants, 52% received medical and 11.2% surgical PDA treatment. Infants with surgical ligation had a higher likelihood of major morbidities (OR 2.09) and neurodevelopmental impairments at two years (OR 1.81). The mortality rate was similar after excluding survival bias. In centers with a higher ligation rate (>10%), the likelihood of major morbidities was also increased (OR 1.49).

The results show a higher burden of surgical ligation compared to medical treatment and suggest a possible need to adapt PDA treatment practices in Switzerland.

Read publication