We aim to develop an Information System to assess quality of health care delivered to very prematurely infants (birth weight less than 1.500 g and/or less than 32 wks) at different units, regions and EU countries. This could contribute to improve the health status of those high-risk infants, and detect any outcome inequalities that might exist, by:
1. create and validate a set of neonatal indicators to evaluate the specific rates of neonatal and post-neonatal mobility;
2. test the hypothesis that gestational age is a better indication of short- and long-term risks than birth weight;
3. use specific health indicators given by participating units for benchmarking to identify areas with opportunities to improve quality-of-care, and monitor their success, in selected areas, we will perform inter-regional comparisons to identify outcomes affected by variability of clinical practices and health delivery systems;
4. develop and validate a minimal follow-up dataset to assess the quality of life at 24 months, and an expanded questionnaire to be tested at selected institutions or regions;
5. assess the predictive value of perinatal indicators for the health status at 24 months; and develop software and tools to collect, transfer, validate, standardise and compare the perinatal and follow-up data collected, using up-to-date ICT.

Health information strand. The strategic aim of the project is to develop an information system to assess the quality of health care delivered to very premature infants (birth weight less than 1500 g and/or gestational age less than 32 wks) in European institutions, regions and countries. We aim to reduce neonatal morbidity and mortality and improve their health status at 2 years, and to detect any inequalities that might exist.

To achieve our aims a prospective, cohort, multicentric descriptive study to be designed to determine birth weight and gestational age specific morbidity rates in the target population of immature infants care at participating units. The key points are: 1. Target population. All live-born infants with a birth weight less than 1,500 g, and/or a gestational age of less than 32 completed weeks (31 wks+6 d) born and cared at participating units. Data from 3,000-4,000 VLBWI/year to be collected form more than 50 NICU at partner’s institutions and from some regional (Liverpool, Basque country and Navarre,...) and national networks (Spain, Portugal, Switzerland, Finland,…). 2. Perinatal dataset. Maternal, socio-economic, prenatal neonatal events and interventions, positive indicators and outcome variables to be recorded (parental consent sought). Items to be selected from those used by Vermont-Oxford Network for over 10 years. Latter, dataset to be adjusted to specific needs detected. Information from NICUs, related to infrastructure, personal, procedures, and level to be gathered. 3. Minimum follow-up dataset to evaluate health status at a 36 months to be developed, and follow that published years ago by A Johnson at Oxford (Arch Dis Child Fet-Neo 1997;76:61; 98;79:F4). A more complete questionnaire to assess health status to be developed. A more completed health assessment tool to also be developed. 4. Data collection and recording. Prospective data collection to start at birth at all partner’s units under their supervision, and to stop at death or discharge form unit. 5. Data and patient identity protection. Data that could direct or indirectly identify patients to remain within units. All procedures to adhere to international protection data and personal identity procedures and legislation. Partners are guarantors of safety of database, that to only be used to achieved the project’s aims. 6. Data validation and quality control. A data quality check to be done at data entry into the software at units, by automatically verification: outliers, completeness. 7. Data standardisation and analysis. Indirect standard rates to be used to overcome effects of population weight composition on comparisons of crude rates. Perinatal and neonatal events, interventions and results to be adjusted by weight and gestational age, and rates, percentiles and extreme values to be check to identify clinical variability of interventions and outcomes. Centres to be informed of any situation of extreme values. 8. Interactive website and software. An Internet-based virtual environment to be set to allow: public/private access to data levels: general, unit, region, country; protection of patient data; introduction and detection of discrepancies/incoherences/missing data; centres could autonomously perform queries to know its relative position among other units displaying statistics/reports/graphics defined by user.

Work package 1: Coordination of the project Work package 2: Dissemination of the results Work package 3: Evaluation of the project Work package 4: Neonatal morbidity indicators Work package 5: Standardised comparisons of morbidity outcomes Work package 6: Minimal dataset of follow-up indicators Work package 7: Outcome research Work package 8: EuroNeoSafe: a Patient Safety Initiative Work package 9: Software and Website