Theme: Clinical Trial: Decision-Making

Clinical Trials: You adjust your life and just do it. (CLN2 / Batten)

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Clinical Trials: You adjust your life and just do it. (CLN2 / Batten)

Parents of two sons, one of whom has CLN2 (Batten disease), describe the ERT protocol that first year living away from home for the trial — time spent in the hospital, CSF draws, weekly schedule, getting to know the ICU staff. “When you’re in the middle of something, you just do it.” Mom notes that you never know how long the trial is going to take.