Status:
ACTIVE_NOT_RECRUITING
Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders
Lead Sponsor:
St. Jude Children's Research Hospital
Collaborating Sponsors:
National Heart, Lung, and Blood Institute (NHLBI)
Conditions:
Sickle Cell Disease
Eligibility:
All Genders
13+ years
Brief Summary
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 researc...
Detailed Description
There is a critical gap in knowledge regarding the attitudes, beliefs, and expectations of parents around clinical research trials involving genomic sequencing of children with sickle cell disease (SC...
Eligibility Criteria
Inclusion
- Parent of child with HbSS, HbS/ β0thalassemia, or HbSC aged 12 months to 18 years at study initiation, irrespective of clinical severity or patient aged 13-18 with aforementioned SCD genotype.
- Informed consent from parent or legal guardian and assent of adolescent participant.
- Has been previously approached for SCRIPP.
Exclusion
- Participants who are unable to converse fluently in English will be excluded. (Permanent)
- Condition or chronic illness, which in the opinion of the PI/Co-I, makes participation unsafe or untenable (i.e. cognitive impairment, concurrent acute morbidity). Participant may be re-evaluated.
- Inability or unwillingness of research participant or legal guardian/representative to give written informed consent.
Key Trial Info
Start Date :
December 17 2020
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
December 1 2025
Estimated Enrollment :
300 Patients enrolled
Trial Details
Trial ID
NCT04416178
Start Date
December 17 2020
End Date
December 1 2025
Last Update
July 15 2025
Active Locations (1)
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1
St. Jude Children's Research Hospital
Memphis, Tennessee, United States, 38105