Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective

BackgroundThe aim of this study was to determine the proportion of patients’ caregivers willing to participate in clinical research and examine the possible barriers against recruitment to clinical research in children with inflammatory bowel disease.MethodsIn a cross-sectional study, caregivers and children with inflammatory bowel disease were surveyed via a questionnaire that addressed parents’ willingness to participate in clinical studies and factors influencing their willingness to participate.ResultsA total of 118 caregivers to children with inflammatory bowel disease [median age 14.5, IQR: 12.0–15.8 years, 60 boys, 61 (52%) with Crohn’s disease] who were followed for a median duration of 1.73 years (IQR 0.4–3.6 years) completed the survey. One hundred and four (88.2%) caregivers answered “Definitely” or “Probably” to participate in clinical research while 14 (11.8%) were “Neutral” or “Probably” unwilling to participate (PConclusionsThe majority of children with inflammatory bowel disease and their caregivers are willing to participate in clinical research.