OBJECTIVES: To compare a novel app-based data capture framework with qualitative data collection in the sickle cell disease (SCD) population.

METHODS: A literature search identified unique concepts and themes in qualitative data previously collected in SCD. These concepts were compared against an outcome inventory created from a group of SCD participants using the app-based Folia home-reported outcomes (HROs) platform. The outcome inventory was further categorized using patient-led concept grouping and mapped to relevant domains based on clinical judgment and subject matter expertise.

RESULTS: Qualitative data collection methods, such as interviews, diaries, and surveys using patient-reported outcome (PRO) measures, provide insight into the subjective burden of SCD. In contrast, direct app-based tracking allows participants to identify and track their experiences flexibly and at an individual level. Aggregated over a period of time, this app-based data collection method creates an outcome inventory - a granular dataset of symptomatology for a specific condition-of-interest.

CONCLUSIONS: In designing a study to understand the nuances of SCD, individualized and participant-driven research methods - such as utilizing an app-based outcome inventory - may enhance existing knowledge. The outcome inventory methodology provides a detailed understanding of SCD burden, contributing to a comprehensive assessment of the disease.