Childhood Onset Survey 2022 Report - Flipbook - Page 3
What are the goals of the Survey…
The goal of the survey is to broaden the number of identified early onset
HSP cases with the aim of:
supporting researchers
connecting the community
discovering trends, including shared variants
informing diagnosis trends for reduction of misdiagnosis
What the Survey is NOT…
It is not a scientific survey; we do not gather personally identifying
information and we do not validate responses.
The survey is not a complete picture. The survey was shared through
social media and foundations focusing on HSP. Respondents are
continuing to complete the survey and we will leave it open for this reason.
The data has not and will not be sold. This is a parent driven, volunteer,
effort to provide self- reported trends and information for the sake of our
children.
How do I complete the Survey…
If you were not able to complete the survey, or did not see it in the past, you
can get to it here… https://forms.gle/h14Gv5SPxiELXyNc9 [make a link]
We are leaving the original survey “evergreen” It will remain open for new
respondents indefinitely
What if I already completed the Survey….
At times and when it makes sense, we will create additional sections to
gather information important to research or quality of life for our children.
These will be shared through FaceBook and via the email addresses
originally entered.
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