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Sanfilippo Syndrome (MPS-III) Symptom Observation Survey_New

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.
1.Family and Home Caregivers
2.Parent/Caregiver (Only) Number of children in the home
3.Parent/Caregiver (Only) Number of children with MSP-III
4.Medical and Clinical Professionals
5.Educational and School-Based Professionals
6.Clinical Trial or Research Team (Site or Sponsor)
7.Support Services and Community Members
8.Professional and Support Services Only: Number of years experience with MSP-III children.
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.)
10.Hyperactivity: (Example: abnormally or extremely active). Describe child’s hyperactivity in your own words (include changes over time):(Required.)
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.)
12.Cognitive decline: (Examples: changes in thinking, memory, or understanding). Describe cognitive decline in your own words (include changes over time):
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.)
14.Observable vision problems: (Examples: doesn’t look where you're pointing). Describe the child’s vision problems (include changes over time):(Required.)
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.)
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.)
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.)
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.)
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.)
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.)
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.)
22.Please include any additional observations about your child's developmental skills or behaviors that we did not touch in this survey.