Retention A high retention rate of 84% was achieved in the PEDS— C study. Ninety-six of the original 114 randomized to therapy adhered to the study protocol as well as with the Zyears of follow-up (82% of those receiving PEG/RV and 86% of those receiving PEG plus placebo). Multiple strategies were used during the study to achieve this, including both traditional and innovative methods. Intensive ongoing education was provided for the participants and their families on the importance of remaining in the study for safety monitoring and to increase the success of the
treatment. Principal investigators and study coordinators met with families at all visits to address any questions and concerns. The study sites also found that building close relationships with participants and their families, and making themselves available to the families outside of business hours proved to be helpful in patient retention. Having these close relationships built trust and fostered the family’s comfort in sharing questions or concerns about the treatment. Personal relationships between the study staff and the participants and their families were particularly helpful in retention during our study.