Inspire partnered with a research sponsor to examine the lived experience, quality of life, and healthcare needs of adults living with Short Bowel Syndrome (SBS). Because SBS is rare and often under-coded, the study required a mixed-methods design capable of capturing both patient-reported data and real-world healthcare patterns.
Through Inspire’s direct-to-participant approach, the team conducted qualitative interviews, fielded a detailed quantitative survey, and linked patient-reported outcomes to real-world claims data through privacy-preserving tokenization. This integrated dataset offered a more complete view of burden, care access, and utilization than traditional data sources alone.
Case Study Highlights Include:
Mixed-Methods Research Design
A three-phase approach combined qualitative interviews, a quantitative PRO survey, and linked real-world claims data to build a holistic understanding of SBS.
Integrated Patient & Healthcare Utilization Insights
The study captured quality-of-life burden, treatment experiences, and daily challenges, then validated these findings against medical and pharmacy claims.
Real-World Economic and Care Patterns
Linked data revealed how care coordination, specialist involvement, and symptom burden shaped utilization and overall cost trajectories.
A Scalable, Patient-Centric Research Model
The approach demonstrated how community-driven studies can illuminate knowledge gaps in rare, under-recognized conditions and guide future care strategies.
This case study is ideal for RWD teams, HEOR leaders, clinical researchers, and sponsors seeking robust, patient-centered methods to study rare diseases and under-coded conditions.