October, 10 2019

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

Locations

1 United States site

Age

> 18 Years

About the study

This is a study for parents of infants 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 Type

Observational

Age

> 18 Years

Gender

All

Inclusion Criteria

1. Adult biological parents of infants with Hemoglobin S-trait identified by NBS who
present for SCT education at NCH.

2. English proficiency will be required

Exclusion Criteria

1. 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.

2. Parents who have previously attended an education session about an abnormal
hemoglobinopathy trait

3. Parents who self-report that they have a child with SCD

4. Parents who self-report that they have SCD.

Interventions

  • Other

Outcome measures

  • Feasibility of implementing of a Sickle Cell Trait education Program: The time required to train a sickle cell trait educator and to deliver the revised sickle cell trait education will be measured
  • Parental Sickle Cell Trait Knowledge

Location

  • Nationwide Children's Hospital, Columbus, Ohio, United States, 43205 [Recruiting]

Contact Research Team

  • Myra Christian-Rancy
    614-722-3690
  • Karina Woodling
    614-722-3733

More info

View on ClinicalTrials
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