Views of parents, adults born preterm and professionals on linkage of real-world data of preterm babies.
Mary SawtellEmily van BlankensteinTahira BilalTaralise HallLisa JuniperJulia KotsoniJuliette LeeNeena ModiCheryl BattersbyPublished in: Archives of disease in childhood. Fetal and neonatal edition (2022)
With appropriate information provision, at the right time, parents, adults born preterm and professionals are supportive of data linkage for research, including where temporary identifiers and opt-out consent are used. Resources are being co-produced to improve communication about routine data linkage.