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The Preterm Clinical Network (PCN) Database: A web-based systematic method of collecting data on the care of women at risk of preterm birth

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posted on 2019-08-30, 15:32 authored by J Carter, RM Tribe, J Sandall, AH Shennan, Z Alfirevic, C Adamson, J Girling, B Tezcan, P Bennett, EA Bonney, N Simpson, AG Care, M Chandiramani, S Daly, AL David, CP James, HC Francis, R Ganapathy, N Greenwold, NL Hezelgrave, C Hillman, F Hoveyda, M Jolly, T Kelly, M Malarselvi, S Patni, BN Manktelow, T Selman, LR Shankar, A Sharp, SJ Stock, V Terzidou, G Tydeman, FA Vecsei
Background: Despite much research effort, there is a paucity of conclusive evidence in the field of preterm birth prediction and prevention. The methods of monitoring and prevention strategies offered to women at risk vary considerably around the UK and depend on local maternity care provision. It is becoming increasingly recognised that this experience and knowledge, if captured on a larger scale, could be a utilized as a valuable source of evidence for others. The UK Preterm Clinical Network (UKPCN) was established with the aim of improving care and outcomes for women at risk of preterm birth through the sharing of a wealth of experience and knowledge, as well as the building of clinical and research collaboration. The design and development of a bespoke internet-based database was fundamental to achieving this aim. Method: Following consultation with UKPCN members and agreement on a minimal dataset, the Preterm Clinical Network (PCN) Database was constructed to collect data from women at risk of preterm birth and their children. Information Governance and research ethics committee approval was given for the storage of historical as well as prospectively collected data. Collaborating centres have instant access to their own records, while use of pooled data is governed by the PCN Database Access Committee. Applications are welcomed from UKPCN members and other established research groups. The results of investigations using the data are expected to provide insights into the effectiveness of current surveillance practices and preterm birth interventions on a national and international scale, as well as the generation of ideas for innovation and research. To date, 31 sites are registered as Data Collection Centres, four of which are outside the UK. Conclusion: This paper outlines the aims of the PCN Database along with the development process undertaken from the initial idea to live launch.

Funding

The PCN Database development and installation was funded by St Thomas’ Preterm Surveillance Clinic’s NHS Innovations Challenge Prize Fund. Ongoing maintenance and support costs are funded by Tommy’s (Registered Charity no. 1060508).

History

Citation

BMC Pregnancy and Childbirth, 2018, volume 18, Article number: 335

Author affiliation

/Organisation/COLLEGE OF LIFE SCIENCES/School of Medicine/Department of Health Sciences

Version

  • VoR (Version of Record)

Published in

BMC Pregnancy and Childbirth

Publisher

BMC (part of Springer Nature)

eissn

1471-2393

Acceptance date

2018-08-06

Copyright date

2018

Available date

2019-08-30

Publisher version

https://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/s12884-018-1967-y

Notes

The data that support the findings of this study are available on request from the corresponding author [JC]. The data are not publicly available due to Research Ethics Committee stipulations that the data must only be released following Database Access Committee review and approval of specific research projects. Project application forms are provided on request.

Language

en

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