What is the National Neonatal Research Database (NNRD)?
The NNRD was established in 2007 to be a repository of quality-assured, curated data for multiple outputs to improve patient care and health services. It contains data items specified within the Neonatal Data Set. Routine clinical information entered into electronic neonatal data systems in all NHS neonatal units across England, Wales and Scotland are transferred to the NNRD. Northern Ireland has expressed a firm intention to participate and is awaiting governance clearance.
Why do we have to pay to get data out of the NNRD?
The NNRD receives no core fund and is maintained through a self-funding model. For this reason, a charge is necessary to cover the costs of maintaining and developing the NNRD. These include the costs of data transfer from electronic data system suppliers, data storage, and the salaries of staff who quality-assure and curate the data, maintain regulatory approvals for all nations, liaise with Trusts/Boards, and extract requested data to study-specific specifications.
What recent changes have there been?
In 2021, the NNRD was integrated into the HDR Innovation Gateway. In line with best practice, the NNRD is likely to move to be located in a Trusted Research Environment in the near future under continued NDAU management. A version of the NNRD, curated for Machine Learning/Artificial Intelligence applications has been developed by the team at the NDAU and will be available to external users in 2022. Work is also underway to link the NNRD to other datasets.
Do parents have to consent for the data to be used in NNRD?
Parents are offered the opportunity to opt out of their baby’s data being held in the NNRD. This process differs across the UK nations. In England, the national NHS opt-out process applies. In all nations, parents can inform neonatal unit staff if they wish to opt-out. Staff must then inform their SR or EPR supplier so that data for the specified patient are not transferred to the NDAU. A parent information leaflet, containing information on how to opt-out, is available and downloadable from the NDAU website. It is recommended that all neonatal units make this information leaflet available to parents. Bliss will be reviewing the availability of the leaflet in their neonatal unit audit. The leaflet may be included in welcome or discharge pack depending on individual neonatal unit’s preference.
Do neonatal units have to provide consent for their data to be included in studies using the NNRD?
Neonatal units contributing to the NNRD, are informed through their UK Neonatal Collaborative lead, about every new research study seeking to use the NNRD and asked if they wish to be included. Neonatal units are also informed about the use of the NNRD for studies conducted by government or NHS authorities, but are not asked for consent.