TY - JOUR
T1 - The Preterm Clinical Network (PCN) Database
T2 - A web-based systematic method of collecting data on the care of women at risk of preterm birth
AU - the UK Preterm Clinical Network
AU - Carter, Jenny
AU - Tribe, Rachel M.
AU - Sandall, Jane
AU - Shennan, Andrew H.
AU - Alfirevic, Zarko
AU - Adamson, Christine
AU - Girling, Joanna
AU - Tezcan, Berrin
AU - Bennett, Phil
AU - Bonney, Elizabeth A.
AU - Simpson, Nigel
AU - Care, Angharad G.
AU - Chandiramani, Manju
AU - Daly, Sean
AU - David, Anna L.
AU - James, Catherine P.
AU - Francis, Helen Claire
AU - Ganapathy, Ramesh
AU - Greenwold, Natalie
AU - Hezelgrave, Natasha L.
AU - Hillman, Catherine
AU - Hoveyda, Fatemeh
AU - Jolly, Matthew
AU - Kelly, Tony
AU - Malarselvi, Mani
AU - Patni, Shalini
AU - Manktelow, Bradley N.
AU - Selman, Tara
AU - Shankar, L. R.
AU - Sharp, Andrew
AU - Stock, Sarah J.
AU - Terzidou, Vasso
AU - Tydeman, Graham
AU - Vecsei, F. A.
PY - 2018/8/17
Y1 - 2018/8/17
N2 - 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.
AB - 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.
KW - Clinical audit
KW - Clinical databases
KW - Clinical networks
KW - Clinical registries
KW - Preterm birth
UR - http://www.scopus.com/inward/record.url?scp=85051934321&partnerID=8YFLogxK
U2 - 10.1186/s12884-018-1967-y
DO - 10.1186/s12884-018-1967-y
M3 - Article
AN - SCOPUS:85051934321
SN - 1471-2393
VL - 18
JO - BMC Pregnancy and Childbirth
JF - BMC Pregnancy and Childbirth
IS - 1
M1 - 335
ER -