Introduction: Regulations designed to protect children participating in clinical research often restrict the availability of research data necessary for the development of age-specific therapies and drug dosing. Few data exist on how children experience participation in clinical research, and studies investigating young children undergoing an intensive medical treatment are lacking.
Methods: Mixed methods with semi-structured interviews and DISCO-RC questionnaires were used to explore young children's and their parents' experiences in clinical research participation during a kidney transplantation trajectory.
Background: Despite the high perioperative risk profile, international guidelines for anesthesia and intensive care unit (ICU) care in pediatric kidney transplantation do not exist. Optimizing hemodynamics can be challenging in these patients, while scientific data to guide decisions in hemodynamic monitoring, hemodynamic targets, and perioperative fluid management are lacking. The limited annual number of pediatric kidney transplantations, even in reference centers, necessitates the urge for international collaboration to share knowledge and develop research and guidelines.
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