Inspire partnered with a global pharmaceutical sponsor to capture the lived experiences of patients and caregivers managing short bowel syndrome–associated intestinal failure (SBS-IF). This rare-disease patient registry used a mixed-methods approach to reveal the emotional, physical, and social burdens of SBS-IF, insights often absent from traditional clinical datasets.
Through Inspire’s direct-to-participant recruitment model, patients and caregivers completed in-depth interviews and surveys that generated high-quality real-world data. Results were published in Nutrition in Clinical Practice in 2025, validating both the methodology and the impact of community-driven research in rare disease.
Case Study Highlights Include:
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Direct-to-Participant Recruitment
Inspire engaged a dispersed rare-disease population quickly and efficiently, overcoming barriers to registry enrollment through its patient community platform.
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Comprehensive Patient & Caregiver Insights
The study combined in-depth interviews and surveys to capture the daily realities of SBS-IF, including quality of life, treatment burden, and emotional wellbeing. - Peer-Reviewed Real-World Data Findings were published in *Nutrition in Clinical Practice* in 2025, demonstrating that direct-to-participant registries can generate robust real-world data to advance understanding of rare gastrointestinal disorders.
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Patient-Centric, Scalable Approach
Community-driven research demonstrated how online health communities can power rare-disease registries, generate actionable real-world data, and amplify patient voices.
This case study is ideal for clinical researchers, medical affairs teams, and sponsors seeking scalable, patient-centric methods to generate real-world data in rare disease.