The Angelman Syndrome Foundation is a national organization of families, caregivers and professionals who care for patients suffering from Angelman Syndrome.
Did you do an entrance and exit interview by the caregivers to capture changes that they saw, or did not see, that could have been lost, or not captured, in the endpoints you were using?
答:
Particularly with rare diseases, we believe that caregiver involvement is critical at the early stages of drug development and their insights are shaping our work every day.
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