NBS Survey from Expecting Health & The Genetic Alliance

Expecting Health, a non-profit organization focused on engaging families and health professionals in pregnancy and newborn health is conducting a survey on family needs for newborn screening education. The goal of this survey is to learn about families’ needs and priorities around newborn screening information. The survey will inform development of a new newborn screening education program designed specifically for families.

Expecting Health is looking for participants who fit one of the following descriptions:

  • You are currently expecting a biological or adoptive child
  • You had a child within the past two years
  • You have a health condition that can currently be identified through newborn screening
  • Someone in your biological or adoptive family (e.g. Family member may include but is not limited to the following: child, parent, sibling, step-parent or sibling, husband, wife, grandparent, aunt, uncle, cousin etc…) has a health condition(s) that can be identified through newborn screening

If you choose to participate, you will be asked to share your opinions about how to receive health information. In appreciation of your time, you can be entered to win a $75 gift card. One participant will be selected by 6/15/2019. Only the person selected will be notified. Please enter your email address on the Google form at the end of the survey. To take the survey, please click this link to go to the survey page. Please contact Natasha Bonhomme at [email protected] if you have questions.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $2,000,000 with 0 percentage financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.