The United Kingdom National Neonatal Research Database: A validation study

Area of Science:

• Neonatal research
• Clinical data management
• Health informatics

Background:

• The National Neonatal Research Database (NNRD) collects clinical data from electronic patient records in UK neonatal units.
• Assessing NNRD's population coverage, data completeness, and accuracy is crucial for its utility in research and quality improvement.

Purpose of the Study:

• To evaluate the population coverage of the NNRD in England from 2008-2014.
• To determine the completeness of key data items within the NNRD.
• To assess the accuracy of patient characteristics, processes, and clinical outcomes recorded in the NNRD against a gold standard dataset.

Main Methods:

• Population coverage was compared against Office for National Statistics live birth data.
• Completeness of seven data items was assessed.
• Accuracy of 44 data items (patient characteristics, processes, outcomes) was evaluated by comparing NNRD data with the Probiotics in Preterm Study (PiPs) trial data, calculating discordancy rates, sensitivity, specificity, and positive predictive values (PPV).

Main Results:

• NNRD demonstrates complete population coverage for infants born between 25+0 and 31+6 weeks gestation in England, with high coverage for earlier gestations (70-90% for 23-24 weeks).
• Completeness for patient characteristics exceeded 90%.
• Accuracy assessments showed low discordancy rates (<5%) for most patient characteristics, processes, and clinical outcomes, with high specificity (>85%) for all outcomes and PPVs ranging from 58.8% to 99.7%.

Conclusions:

• The National Neonatal Research Database (NNRD) possesses high data completeness and quality.
• The findings assure the reliability of NNRD data for diverse applications, including national audit, health service evaluations, quality improvement initiatives, and scientific research.