Rare disease research faces a unique data problem: patients are hard to find, Patient Reported Outcomes (PRO) and clinical data live in separate systems, and stitching it all together into something usable for clinical development and commercialization often exceeds what internal teams can manage alone — leaving gaps across the portfolio right when insights matter most.
Inspire partnered with a large pharma to close that gap across three rare conditions — Short Bowel Syndrome (SBS), CIDP, and MMN. Inspire’s platform sourced patient-reported outcome measures (PROMs) directly from rare-condition patients and integrated them with longitudinal clinical data, closing the internal gaps in data integration and analysis that had been slowing insight generation.
This case study includes:
- The portfolio-wide challenge Why sourcing hard-to-reach rare-disease patients and integrating PRO and clinical data longitudinally exceeded internal capabilities — and what that meant for data gaps across the portfolio.
- The end-to-end approach How Inspire gathered PROMs directly from patients and combined them with longitudinal clinical data across three distinct rare diseases.
- The outcome How integrated claims and patient-reported data delivered the end-to-end data generation and dissemination that accelerated clinical development and commercialization strategy.
Download the case study to see how Inspire supported three rare diseases end-to-end to improve data strategies.