Priorities when deciding on participation in early-phase gene therapy trials for Duchenne muscular dystrophy: a best-worst scaling experiment in caregivers and adult patients.
Ryan S PaquinRyan FischerCarol MansfieldBrennan MangeKatherine BeaversonAnnie GanotAmy Strong MartinCarl MorrisColin RenschValeria RicottiLeo J RussoAlesia SadoskyEdward C SmithHolly L PeayPublished in: Orphanet journal of rare diseases (2019)
Our data demonstrate prioritization of anticipated benefits and opportunity costs relative to potential harms and procedures in gene therapy trial decision making. Such data inform protocol development, education and advocacy efforts, and informed consent.