Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders
Recruiting
Observational Study
Sickle Cell Disease
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
Healthy Volunteers Welcome
You do not need to have the condition being studied to take part.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 13 and older
- Sex
- Any
- Study type
- Observational
- Participants needed
- 352 (estimated)
- Sponsor
- St. Jude Children's Research Hospital · Other
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About This Trial
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…
Trial Locations
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Eligibility Criteria
Inclusion Criteria
Group 1 (Survey and Interview) Participants only:
* 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 …
Contacts