Actively Recruiting
Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders
Led by St. Jude Children's Research Hospital · Updated on 2026-05-01
352
Participants Needed
1
Research Sites
310 weeks
Total Duration
On this page
Sponsors
S
St. Jude Children's Research Hospital
Lead Sponsor
N
National Heart, Lung, and Blood Institute (NHLBI)
Collaborating Sponsor
AI-Summary
What this Trial Is About
The primary objectives of this prospective mixed-method interview study are to use semi-structured interviews in parents of sickle cell disease (SCD) patients to describe parental attitudes of research involving genomic sequencing, including concerns about participation and expectations from researchers and second, to use surveys to quantitatively measure genetic/genomic knowledge, trust in health care provider, and literacy/numeracy ability in parents of children with SCD and adolescents with SCD. Secondary objectives are development of a web-based tool about treatment options for SCD that fosters patient-clinician communication and promotes shared decision-making. The web-based tool will undergo usability and pilot testing to ensure it is accessible to families and provide data about strategies for integrating into clinical conversations about treatment options. Investigators will use the data generated to reduce the risk of misunderstanding about DNA and genetic research and build strong relationships between SCD families and researchers in the future. The project will design educational information and study materials to help parents of children with SCD understand important details about genomic medicine in SCD care.
CONDITIONS
Official Title
Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Parent of child with HbSS, HbS/ β0 thalassemia, or HbSC aged 12 months to 18 years at study start, or patient aged 13 to 18 years with these SCD types
- Informed consent from parent or legal guardian and assent from adolescent participant
- Has been previously approached for SCRIPP (for Group 1)
- Adult patient or parent of child with HbSS, HbS/ β0 thalassemia, β+ thalassemia, or HbSC aged 12 months to 18 years at study start, or patient aged 16 to 18 years with these SCD types (for Group 2)
- Parent of child or patient aged 13 and up with HbSS, HbS/ β0 thalassemia, β+ thalassemia, or HbSC (for Group 3)
You will not qualify if you...
- Unable to speak English fluently
- Condition or chronic illness making participation unsafe or untenable (such as cognitive impairment or acute illness), as judged by the investigator
- Unable or unwilling to provide written informed consent or assent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
St. Jude Children's Research Hospital
Memphis, Tennessee, United States, 38105
Actively Recruiting
Research Team
L
Liza M. Johnson, MD, MPH, MSB
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
3
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