Theme: Clinical Trial: Decision-Making

Clinical trials: Weighing the risks; A Leap of Faith (CLN2 / Batten)

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Clinical trials: Weighing the risks; A Leap of Faith (CLN2 / Batten)

“We were taking a leap of faith because there was nothing else there.” Parents of two sons, one of whom has CLN2 (Batten disease), talk about how they considered enrolling their young son in the trial: they learned from a previous trial in Europe. “When you get a diagnosis that your child is going to pass away, the side effects are not a top priority. It goes back to doing something. Let’s do this.”