Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers.

ABSTRACT: ObjectiveTo describe the perspectives of participants and caregivers of pediatric participants on data sharing in clinical craniofacial research.DesignQualitative interview study of research participants' attitudes about data sharing.SettingOne-to-one interviews via web conferencing.Patients, ParticipantsAdults (n = 7) and adolescents (n = 8) with craniofacial microsomia and caregivers (n = 20) of children with craniofacial microsomia who previously participated in clinical craniofacial research.InterventionsSemistructured interview guide addressing 4 main topics: (1) expectations about data collection and sharing; (2) preferences and limitations for data sharing; (3) consent/assent language; and (4) gaps and future needs.Main Outcome Measure(s)We iteratively developed a qualitative codebo

SUBMITTER: Kraft SA 

PROVIDER: S-EPMC12455614 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature