Developing and piloting a preterm birth registry prioritizing social determinants of health and patient-reported data

Biomedical factors and social determinants of health (SDH) affect preterm birth (PTB). Given the complexity of PTB and the increasing rates in the United States, public datasets involving multicomponent variables--from biomedical to structural--can motivate novel interventions to address PTB in the US. The primary aim of this study was to develop a PTB registry based on multi-modal data collection tools that prioritize biomedical and SDH data and identify PTB phenotype (i.e. spontaneous labor, preterm premature rupture of membrane, or medically indicated). The secondary aim of this study was to execute a pilot study to assess feasibility. This study aimed to describe recruitment practices, assess data accessibility and concordance, and to provide an example of how the registry can be used to generate hypothesis and analyze data. We designed the registry through a conceptual model provided by the Dahlgren and Whitehead model of SDH using validated questionnaires and literature on PTB. The registry included a survey, interview, and medical and birth certificate abstraction. To pilot the registry, we recruited 92 participants who delivered preterm, were admitted for risk of preterm delivery, or delivered at term at an urban public hospital. Enrollment was most effective in-person and in the postpartum period. Consent to different parts of the registry was similar regardless of when participants were recruited. There was also a range of data concordance depending on the data source and chosen variable. The registrys PTB phenotype algorithm identified the correct PTB phenotype 100% of the time. The example analysis demonstrated six unique SDH domains. Participants who delivered preterm reported an average of 11 total stressors and 19.7 protective items and 66% had a significant medical or obstetric comorbidity. Results of this study demonstrate that a PTB registry is feasible and could help advance research to prevent PTB.