A Comprehensive Program to Increase Sickle Cell Trait Knowledge and Awareness Among Parents of Young Children Identified in Newborn Screening

About the study

This is a study for parents of young children with Sickle Cell Trait (SCT) identified by newborn screening who are referred and present for in person SCT education at the Institution.

The study will determine the feasibility of implementing a SCT education program (SCTaware) that is appropriate for all parents, including those with low base knowledge and low health literacy and then test if results in high and sustained SCT knowledge.

Study point of contact

Amy Yekisa
[email protected]


> 18 Years


Hemoglobin S-trait


Not Applicable

Study type






participation requirements

Adult biological parents of children <3 years old with Hemoglobin S-trait identified by NBS who present for SCT education at NCH. English proficiency will be required

participation restrictions

Parents who self-report that they do not have functional verbal English (report that they are not proficient) or if they request an interpreter for the education session.
Parents who have previously attended an education session about an abnormal hemoglobinopathy trait
Parents who self-report that they have a child with SCD
Parents who self-report that they have SCD.
Parents who report that they or their partner is currently pregnant

Last updated 2022-05-05