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

Abstract

BackgroundDespite 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.MethodFollowing 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.ConclusionThis paper outlines the aims of the PCN Database along with the development process undertaken from the initial idea to live launch.

Effects of emergency cerclage on the neonatal outcomes of preterm twin pregnancies compared to preterm singleton pregnancies: A neonatal focus

“…A study called the ENCIRCLE trial (Emergency Cerclage in Twin Pregnancies at Imminent Risk of Preterm Birth: an Open-Label Randomized Controlled Trial has already begun in the UK as a randomized control trial, and the data will be available in the near future for twins [ 31 ]. Finally, similar to the preterm clinical network database study, a large–scale prospective RCT on this topic is urgently needed [ 32 ].…”

The use of quantitative fetal fibronectin for the prediction of preterm birth in women with exposed fetal membranes undergoing emergency cervical cerclage

“…The study had ethical approval under the Preterm Birth Clinical Network Database (Research Ethics Committee (REC) Reference 16/ES/0093) 12 . Women were recruited to the study if they had singleton pregnancies, and were considered high-risk for preterm birth (one or more of: previous sPTB <37 weeks' gestation; previous second-trimester miscarriage ≥16 weeks; previous invasive cervical surgery; uterine abnormality; incidental finding of a short cervix <15mm).…”

The use of specialised preterm birth clinics for women at high risk of spontaneous preterm birth: a systematic review

“…Improving consistency in care will also allow clinics to combine their outcome data in a more meaningful way, enabling high-quality research into the effectiveness of interventions provided in preterm birth clinics, along with comparisons between clinics [5]. The UK Preterm Clinical Network has already developed a bespoke internet-based database that uses an agreed minimal dataset, allowing systematic and standardised collection of clinical data from preterm birth clinics within the network [58]. In 2018, there were seven sites using this database, and an additional 24 sites were registered as Data Collection Centres, four of which are outside of the UK [58].…”

“…The UK Preterm Clinical Network has already developed a bespoke internet-based database that uses an agreed minimal dataset, allowing systematic and standardised collection of clinical data from preterm birth clinics within the network [58]. In 2018, there were seven sites using this database, and an additional 24 sites were registered as Data Collection Centres, four of which are outside of the UK [58]. This collaborative approach to data collection, if combined with a consistent approach to care in preterm birth clinics, has great potential for the future evaluation of existing and new interventions aimed at optimising the care of asymptomatic women at high risk of spontaneous preterm birth.…”