Thank you for joining our survey about MPS-III (Sanfilippo syndrome). We want to learn from your experiences caring for your child or a child in your care, including the symptoms you see and how you experience them day-to-day. Your answers will help create better guidelines and support for families like yours. Please fill out only the parts that apply to you. For items that require a response, and you have not observed the symptom, please indicate "not observed" and move to the next item. Feel free to share this link with others in the MPS-III community or care providers. We recommend you read all items before providing your responses. Thanks again for you contribution to the valuable research.

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1. Family and Home Caregivers

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2. Parent/Caregiver (Only) Number of children in the home

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3. Parent/Caregiver (Only) Number of children with MSP-III

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4. Medical and Clinical Professionals

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5. Educational and School-Based Professionals

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6. Clinical Trial or Research Team (Site or Sponsor)

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7. Support Services and Community Members

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8. Professional and Support Services Only: Number of years experience with MSP-III children.

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9. Child struggles with speech (Examples: limited vocabulary, hard to understand, replaces words with gestures). Describe child’s speech in your own words (include changes over time): (Required.)

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10. Hyperactivity: (Example: abnormally or extremely active). Describe child’s hyperactivity in your own words (include changes over time): (Required.)

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11. Challenging Behaviors (Example: unsafe behavior that is disruptive to you and others). Describe these challenging behaviors in your own words (include changes over time): (Required.)

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12. Cognitive decline: (Examples: changes in thinking, memory, or understanding). Describe cognitive decline in your own words (include changes over time):

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13. Observable Hearing difficulties: (Child doesn’t look at you when you talk, seems to ignore you, sits too close to television). Describe hearing difficulty in your own words (include changes over time): (Required.)

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14. Observable vision problems: (Examples: doesn’t look where you're pointing). Describe the child’s vision problems (include changes over time): (Required.)

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15. Walking: (Example: coordination, irregular steps, tip-toe walking, stiff, waddling, unstable, etc.). Describe the child’s walking in your own words (include changes over time): (Required.)

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16. Irregular movement: (Example: repetitive movements, movements out of their control). Describe the child’s irregular movements in your own words (include changes over time): (Required.)

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17. Struggles with motor skills: (Example: using utensils, following demonstrated examples, tying shoes, jumping jacks). Describe the child’s motor skills in your own words (include changes over time): (Required.)

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18. Vocal Expression: (Examples: using sounds in place of words). Describe the child’s vocal expression in your own words (include changes over time): (Required.)

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19. Style of Speech: (Examples: repeating their own word or statements, repeating other people, stuttering, etc.). Describe the child’s style of speech in your own words (include changes over time): (Required.)

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20. Child’s communicating to others: (example: struggles with communicating needs/wants, is unclear, struggles with back and forth conversations). Describe the child’s ability to communicate to others (include changes over time): (Required.)

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21. Child’s understanding of others: (example: following directions). Describe the child’s understanding of others in your own words (include changes over time): (Required.)

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22. Please include any additional observations about your child's developmental skills or behaviors that we did not touch in this survey.

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