Patient recruitment is one of the hardest problems in rare disease research. Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) affects a small, dispersed patient population — which makes assembling a large, consented research cohort.one of the hardest problems in rare disease research. Add in the need for linked structured and unstructured EHR data across disparate health systems, plus validated longitudinal outcome tracking, and conventional recruitment methods start to break down fast.
Inspire recruited 150+ CIDP patients with HIPAA-compliant authorizations directly through our authenticated patient communities. Using Health Information Exchange (HIE) systems, Inspire curated comprehensive structured and unstructured EHR data for each patient, while integrating condition-specific PRO scales — including INCAT and I-RODS — to track outcomes over time. Tailored engagement, including data stories and educational materials, kept patients participating throughout the full length of the study.
This case study includes:
- The recruitment challenge Why rare disease cohorts like CIDP are so difficult to assemble at scale, and where conventional methods fall short.
- Connecting the data How structured and unstructured EHR data were pulled through HIE and paired with condition-specific PRO scales to build a deeply characterized longitudinal dataset.
- What sustained participation The engagement strategies — including data storytelling and patient education — that kept the cohort active throughout the study.
Download the case study to see how Inspire delivered a 150+ patient CIDP cohort with study timelines intact.