Survey and interviews for families affected by sickle cell disease
Part of Blood & lymphatic, Genetic & congenital clinical trials.
This study collects feedback through surveys, interviews, and focus groups from people affected by sickle cell disease. Your input helps the research team improve how genomic and gene-therapy information and needs are understood for patients and caregivers.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You’re a parent/guardian (or the participant if you’re an adult) of a child or teen with sickle cell genotypes like HbSS, HbSC, or HbS with thalassemia
- Your child’s age is about 12 months to 18 years at the start (with group-specific age cutoffs)
- You can participate in English (you must be able to speak English fluently)
- A parent/guardian must be able and willing to sign written consent (and teens must assent)
- You should be well enough to safely participate—no issues that would make study participation unsafe (for example, certain severe health or cognitive concerns)
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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