A Program to Increase Sickle Cell Trait Knowledge Among Parent of Young Children Identified in Newborn Screening (SCTaware)

  • End date
    Dec 31, 2022
  • participants needed
  • sponsor
    Susan Creary
Updated on 15 May 2022
hemoglobin s
sickle cell trait
sickle hemoglobin
Accepts healthy volunteers


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.


This is a single center, observational study to develop an education program for parents of young children diagnosed with Sickle Cell Trait. This will be accomplish by evaluating the current Ohio education in-person program, and assessing, through a set of questionnaires, how much participants are understanding about this diagnosis.

During phase I of the study, participants will be video-taped, and a set of questionnaires will be answer before and after education is given. This data will then be analyzed by the SCT Team in order to develop the Program.

During phase II of the study, population with the same criteria as phase I will be enrolled, however they will receive the revised "SCTaware" education. Pre and post education questionnaires will also be answered. In addition, participants during this phase will receive follow-up calls at 1 and 6 months to complete additional surveys.

In addition, the investigators will be using the Decisional Conflict Scale (DCS) to explore if parents experience decisional conflict about whether or not to obtain SCT testing and if SCTaware reduces this conflict

Condition Sickle Cell Trait
Treatment Education
Clinical Study IdentifierNCT03984500
SponsorSusan Creary
Last Modified on15 May 2022


Yes No Not Sure

Inclusion Criteria

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

Exclusion Criteria

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
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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