Data Collection
MNDS Minimal Neonatal Dataset
Range: 22 0/7 - 31 6/7 weeks gestational age or 400 - 1500 g birth weight
Most appropriate age: live-birth until first discharge home
Centers: all Level III and IIb units
Start: 2000
B34 Dataset of infants < 34 weeks
Range: 32 0/7 - 33 6/7 weeks' gestational age
Most appropriate age: live-birth until first discharge home
Centers: Level III or IIb units
Start: 2019
Asphyxia Registry
Range: 35 0/7 - 42 6/7 weeks' gestational age with moderate or severe encephalopathy due to perinatal asphyxia
Most appropriate age: live-birth until first discharge home
Centers: Level III and IIb units
Start: 2011
Follow-up at 18-24 months corrected
Range: 15-29 months
Most appropriate age: 24 months
Centers: all centers, all infants according to list of missing infants
Start: 2000
Follow-up at 5.5-6 years
Range: 4.5-6.5 years
Most appropriate age: 5.5 years
Centers: all centers, all infants according to list of missing infants
Start: 2000
Parent questionnaire
Range: 4.5-12 years
Most appropriate age: 5.5 years
If parents refuse FU5
Start: 2006
SDQ questionnaire
Range: 4.5-12 years
Most appropriate age: 5.5 years
Optional addition to FU5
Content of data collection at primary hospitalization
Out of the 108 items collected for the MNDS, a group of experts selected those items that reflect the performance of the individual units as opposed to items that cannot be modulated (such as gender, birth defects, socio-economic status, etc.).
The selected items fulfill international standards for the description of mortality and common morbidities in very preterm children. They were then tested for their suitability as quality indicators (QI’s) using the strict criteria of QUALIFY. QUALIFY was developed by the German National Institute for Quality Measurement in Health Care (BQS) as an instrument for the structural appraisal of quality indicators in health care. It offers 3 criteria for the proposed quality indicator’s relevance, 8 for its scientific soundness, and 9 for its feasibility.
Content of routine follow-up assessments
At 18-24 months
Bayley II PDI, MDI (Bayley III for children born as of 2012), neurological exam, CP, gross motor function, visual exam (incl. Lang test), hearing exam
At 5-6 years
K-ABC II, neurological exam, CP, Zürcher Neuromotorik, visual exam, hearing exam
Unit Survey
Annual collection of details on infrastructure, staff, admissions, processes, quality and training/teaching supervised by the Committee for the Accreditation of Neonatology Units (CANU).