What type of study is this?

This is a Qualitative Study study.

December 8, 2025Blood

Decisions about gene therapy do not occur in isolation: Co-development of a website about treatment options for sickle cell disease

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Authors

ATAlex Thomas LBLakiea Bailey AYAmanda Young

Discussion

Member takes

Implication

Focus groups guided the development of a web-based educational tool for sickle cell disease treatment, highlighting the need for shared decision-making and health literacy.

Key Points

Website aids shared decision-making for sickle cell disease, promoting informed patient choices through clear information.
Findings from focus groups emphasize the need for accessible education about gene therapy and hematopoietic stem cell transplantation.
Community engagement through user-centric design helped prioritize treatment options and educational content for patients.
The web-based tool, mySCDstory.org, uses graphic storytelling to present various treatment pathways clearly and interactively.

Cite This Study

Thomas et al. (2025) studied this question.

synapsesocial.com/papers/69362f7f4fa91c937236e5a4 https://doi.org/10.1182/blood-2025-6153

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Implication

Focus groups guided the development of a web-based educational tool for sickle cell disease treatment, highlighting the need for shared decision-making and health literacy.

Decisions about gene therapy do not occur in isolation: Co-development of a website about treatment options for sickle cell disease

Discussion

Member takes

Implication

Key Points

Cite This Study

Decisions about gene therapy do not occur in isolation: Co-development of a website about treatment options for sickle cell disease

Discussion

Member takes

Implication

Key Points

Cite This Study

Also Consider

Also Consider