Childhood Onset Survey 2022 Report - Flipbook - Page 23
Section 5 of 6
Research
● Have you registered your child with the Natural History Study for Early Onset
HSP managed by the Boston Children's Hospital
(https://clinicaltrials.gov/ct2/show/NCT04712812)?
● If you answered "no" to the previous question, would you like the research
coordinator from Boston Children's Hospital to reach out to you?
● Does your child participate in any other research studies?
● If you answered "yes" to the previous question, can you please share which
researcher and/or institution you work with?
Section 6 of 6
Further Communication
● Can the survey organizers contact you to ask further questions or ask you to
participate in future surveys?
● Can the researchers, with whom the results of this survey will be shared, reach
out to you with questions?
● Are there any other researchers with whom you would like us to share the
results of this survey? If yes, can you please share their name, institution and
contact details?
● If another survey participant has the same gene variant as your child, would you
like to be informed and contacted?
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