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Thank you for agreeing to participate in this study. As you probably know we understand only a small portion of the causes that lead to holoprosencephaly and what leads to the wide spectrum of clinical features seen in patients with holoprosencephaly. In this study, we are trying to better understand the different factors that can contribute to holoprosencephaly and it’s presentation that often varies from patient to patient. We will ask you some questions about how your pregnancy with your child was, about your lifestyle routines during and before your pregnancy as well as where you lived. We will ask about other pregnancies as well, about your own health history and that of your partners. You can always refuse to answer any question or group of questions. Your answers are very important to us. There are no right or wrong answers.

To get started:

  • Navigate through the menu to learn more about the study.
  • Log in to the application and fill out questionnaires.

Please contact us if you have any questions or concerns.