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GENE THERAPY EDUCATION


Created a suite of educational materials for patients considering gene therapy as a treatment for sickle cell disease (SCD) to inform and empower patients of all ages and their caregivers.


PROJECT SPONSOR
Cincinnati Children’s Hospital Medical Center


TIMELINE
15 Weeks


SKILLS 
User Research
Data Visualization
Information Design
Content Development
Storyboard Creation
Prototyping




This work is confidential, however I am able to share hard copies in interviews.


BACKGROUND
In 2023, the FDA approved two gene therapies for patients aged 12 and older with sickle cell disease (SCD). There became an immediate need to create educational resources for patients and families to comprehend the gene therapy processes used in treating sickle cell disease.

MY  ROLE
As the Design Research Co-Lead for this project, I was responsible for developing and conducting UX research to understand needs of the patient and their caregivers. I coordinated interviews and created guides in order to gather valuable insights, visualizing it into an editable map. Furthermore, I conducted multiple co-creation sessions with the stakeholders to validate both educational content and functionality.


PROCESS
  • Conducted primary and secondary research through interviews with sickle cell patients, their families, and providers.

  • Visualized the gene therapy process in the context of sickle cell disease, using to inform best appraoch for kids, teens, and caregivers.

  • Developed a system approach through pamphlets and guided workbooks to support all affected by SCD.

  • Developed functioning prototypes to be distributed and initially tested with CCHMC team.




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