BPSU will soon launch a new data collection platform

We've worked with the University of Dundee Health Informatics Centre on a new platform to collect data on rare diseases - making it easier for clinicians to report cases and complete their clinical questionnaires.
Man at laptop with notes

The British Paediatric Surveillance Unit (BPSU) is proud to announce the launch of this news data collection platform as of 4 April. It will be piloted with our study, surveillance of neonatal stroke, which runs from April 2022 to May 2023 (13 months of surveillance), with follow up until May 2025.

The study will be led by the neonatal research team at The University of Nottingham headed by Dr T’ng Chang Kwok and Professor Don Sharkey. It's funded by the 2019 Sir Peter Tizard bursary and supported by Bliss, the national charity for babies born preterm or sick.

It  will inform us of the impact of neonatal stroke to better allocate resources. This study will describe the associated factors, management and outcomes following neonatal stroke. Neuroimages will also be collected as part of the study which will help with understanding the condition and its diagnosis. By exploring how babies with stroke present and are cared for, future studies looking at prevention and new treatment options can be better designed.

We've developed some FAQs for clinicians registered on the BPSU scheme about how to use this new data collection platform, including how you'll use this alongside our current 'orange card' platform.

Data collection platform FAQs