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Survey for families with children of all ages with Smith Lemli Opitz syndrome
Introduction
Outline
This is a SLOS Natural History Project survey for families with a child of all ages with SLOS. The survey asks for your input on symptoms and aspects/features of SLOS that you find important and challenging.
What will we do with your data?
In the survey, we ask for contact information. This data will only be used if we need to contact you to clarify certain aspects. The results will be presented as statistics in an anonymous way. We will not share individual responses with any third party entities. Since SurveyMonkey is the platform used for gathering responses, data processing is per their policy. The SurveyMonkey privacy policy and cookie policy are accessible at the bottom of the SurveyMonkey home page.
Do you have any further questions?
Please contact: parentsSLOSNH@metab.ern-net.eu
Deadline: Please answer the survey as soon as possible, within three weeks of the emailed letter being received.
By clicking "agree", you confirm that:
you have read and understood the previous information;
you voluntarily agree to participate;
you are a family member/caregiver of someone living with SLOS.
