Parent Experience Survey:
Medication Use in Children with H-ABC
Dear parents/caregivers:
Thank you for taking a moment to complete this brief survey. Your responses will help the Foundation better understand real-world experiences with this medication among children with H-ABC/TUBB4A Leukodystrophy. Participation is voluntary, and all information you provide will remain confidential and reported only in summary form. No personally identifying details will be collected or shared.
The survey ask whether your child has received certain drugs and, if so, gather general information such as dosage, changes in dosing, age at use, duration, observed improvements, and any side effects. Your insight is valuable and helps support responsible research, informed decision-making, and the well-being of the H-ABC community.