NNRD Newsletter June 2022

June 2022 National Neonatal Research Database (NNRD) Newsletter View a map of UK Neonatal Collaborative neonatal units, children's hospitals with a neonatal surgical unit, and hospices, here, and NNRD data visualisation tools here Adult Preemie Advocacy Together with Health Data Research UK, Network we have created a series of infographics to improve the visibility and awareness We are a group of like-minded adults from around the world who were born prematurely, often of the NNRD referred to as ‘preemies’. We strive to connect with and advocate for other adults born early, regardless of their gestation at birth or health outcomes. Each of us has a story that is unique to our own experiences. However, we have found that there are common themes and understandings within the adult preemie community - we have found our “clan”. Follow us on Twitter @Adultpreemies Created by Stephanie Parrott, HDR-UK

ePARCA-R service improvement study We have previously reported on a six-month feasibility study in north-west London to test processes for an electronic, automated version of the validated parent questionnaire (PARCA-R). We are delighted to inform you that recruitment has been completed and that the study has been highly successful. We will be reporting the results in the next few weeks. NNRD-AI is going live! Mapping NNRD to SNOMED-CT NNRD-AI is a version of the NNRD curated Mapping of the NNRD to the OMOP-common for machine learning and artificial data model has been carried out as part of an award from the European Health Data Evidence intelligence applications. Its development Network. This work is nearly complete and we was supported by a grant from the MRC are currently in the process of mapping the After extensive testing, NNRD-AI is going live and will available to researchers in the next NNRD to SNOMED CT. few weeks. NNRD HDR-UK Infrastructure Services Development We received an award to profiling, created a list of increase in the number of integrate, test and evaluate project uses and revamped users and page views widely current Health Data Research metadata for which we spread throughout the world. UK (HDR-UK) Innovation received a platinum richness Gateway services for NNRD score. We have also been Our thanks to everyone for a users. We are pleased to privileged to have had the truly collaborative UK effort inform you the project has support of HDR-UK for an that is improving the care of been completed successfully. opportunity campaign that sick and preterm newborn We have improved NNRD data translated into a substantial babies. New projects utilising the NNRD Advancing standards and methodologies to Caring for babies with palliative care needs generate real world evidence from real and/or multiple complex health needs with an world data through a neonatal pilot project uncertain future in England and Wales 2015- CI: Professor Mark Turner, University of 2020 Liverpool; Dr Kanwaljit Singh, C-Path Institute CI: Cheryl Battersby, Imperial College London Funder: US Food and Drug Administration Funder: Chelsea and Westminster + charity VERY IMPORTANT Stay up-to date!!! We rely on and are grateful to UK Neonatal Collaborative leads to keep you informed of NNRD developments and feed back your views. Please check your neonatal unit entry here, and e-mail us if there are any changes. Thank you!! For further information contact: Mr Richard Colquhoun, Neonatal Data Analysis Unit Manager, Imperial College London, Chelsea and Westminster Hospital Phone: 020 3315 5841; e-mail: [email protected] www.imperial.ac.uk/neonatal-data-analysis-unit