Aims and Description
In recent decades, technical advances and improved medical treatment have resulted in better perinatal care, leading to significantly higher survival rates in infants born below 32 weeks of gestation. Approximately 850 births per year (1% of all births in Switzerland) are concerned and their number is steadily growing. 10-15 % of these high-risk newborns die at or soon after birth and 10–15 % of the surviving infants develop severe disability such as cerebral palsy, mental retardation, or severe sensory impairment.
The chief aim of the Swiss Neonatal Network & Follow-Up Group (SwissNeoNet) is to maintain and / or improve the quality and safety of medical care for high-risk newborn infants and their families in Switzerland through a coordinated program of research, education and collaborative audit.
The information below is oriented towards professionals. Information about the Swiss Neonatal Network and Follow-up Group for parents can be found on the following link.
In support of its aim, SwissNeoNet hosts the official medical quality register for the Swiss level III and level IIB units. Participation for these units is mandatory according to the intercantonal declaration for Highly Specialized Medicine (HSM) of September 22, 2011 and the Society’s Standards for Levels of Neonatal Care in Switzerland.
Inaugurated in 1995, SwissNeoNet now routinely collects data from 9 level III, 6 level IIB and 16 neuro-/developmental pediatric units encompassing information about the care and outcomes of high-risk newborn infants. Data collection is monitored for population coverage, dataset completeness, plausibility and reliability. Data quality is audited within a three year cycle.
SwissNeoNet releases an annual quality report for participating centers encompassing up to 20 process- and outcome quality indicators. It annually collects data on unit infrastructure evaluated by the Committee for the Accreditation of Neonatology Units (CANU). To discuss quality issues and educational purposes, it hosts bi-annual meetings/symposia for the NEO Directors Group and the Follow-up Group, respectively. The SwissNeoNet member platform offers tools for unit-to-unit quality improvement collaboration (mailing lists, event-organizer, forum, file-sharing and survey builder).
SwissNeoNet coordinates cross-sectional and longitudinal cohort studies that are performed by local researchers using SwissNeoNet’s prospectively collected data. These studies focus on mortality, morbidity and/or long-term outcome issues and the analysis of risk factors for development. The network disseminates its research in scientific articles in peer reviewed medical journals.
SwissNeoNet supports the units logistically to ensure that each patient receives primary care (NICU bed availability) and follow-up assessments at 9 months, 2, 3 and 5-6 years of age (FU missing lists) to ensure early diagnosis and intervention.
With regards to its Follow-up program, the SwissNeoNet also supports training of new staff and coordinates the launch of new testing instruments between centers.