The Picture Comes into Focus for Patients Suffering with Rare Eye Disease

A pharmaceutical sponsor developing a retinitis pigmentosa (RP) treatment approached Verana Health to access de-identified data from the American Academy of Ophthalmology IRIS Registry to better understand the disease burden RP patients face. The sponsor sought to analyze clinical outcomes, comorbidities, and healthcare cost and resource utilization (HCRU) patterns among RP patients. The page describes Datavant's data collaboration platform as enabling access to this curated registry data for research purposes. No specific quantitative outcomes are stated in the visible page content.

The customer is anonymised in Datavant’s own case study — not withheld by us.

Datavant is the tokenization and linkage infrastructure behind most of the US real-world-data ecosystem — it de-identifies and connects patient records across health-data partners without exposing PII.

This sits in the Data Providers stage of the AI use-case lifecycle: Named examples from the real-world-data, claims and competitive-intelligence providers pharma AI systems are trained on, benchmarked against, or run inside of.