What type of study is this?

This is a Human Clinical Trial study.

What question did this study set out to answer?

To assess caregivers' perspectives on clinical trial participation for sickle cell disease and identify barriers.

December 8, 2025BloodOpen Access

Bridging the gap: Global caregiver perspectives on awareness, motivators, and barriers to clinical trial participation in sickle cell disease

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Authors

JMJohnny MahlanguNational Health Laboratory Service DFDarren Fleetwood ETEmma TanThe University of Sydney

Discussion

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Implication

Survey reveals caregiver awareness gaps and barriers to clinical trials for sickle cell disease in young adults, indicating need for improved engagement strategies.

Key Points

To assess caregivers' perspectives on clinical trial participation for sickle cell disease and identify barriers.
Conducted a structured survey of caregivers from 17 countries from October 2022 to August 2023.
Participants reported awareness, motivations, and barriers related to clinical trials for sickle cell disease.
Caregivers rated the importance of various motivators and barriers on a 7-point scale.
199 caregivers completed the survey, primarily parents of adolescents with sickle cell disease.
43% of caregivers lacked awareness of clinical trials, with notable regional differences in awareness.
54% of caregivers were likely to support participation in clinical trials, but only 19% reported actual participation.

Cite This Study

Mahlangu et al. (2025) studied this question.

synapsesocial.com/papers/69362f514fa91c937236d99a https://doi.org/10.1182/blood-2025-2952

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Implication

Survey reveals caregiver awareness gaps and barriers to clinical trials for sickle cell disease in young adults, indicating need for improved engagement strategies.

Bridging the gap: Global caregiver perspectives on awareness, motivators, and barriers to clinical trial participation in sickle cell disease

Discussion

Member takes

Implication

Key Points

Cite This Study

Bridging the gap: Global caregiver perspectives on awareness, motivators, and barriers to clinical trial participation in sickle cell disease

Discussion

Member takes

Implication

Key Points

Cite This Study

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