Linking Curated IRIS Registry Data with Claims Data Gives Trial Sponsor Insights into Healthcare Utilization, Global Burden of Rare Eye Disease


Helene Fevrier, Quantitative Sciences Manager

Retinitis pigmentosa (RP) is a rare degenerative hereditary disease that causes cells in the retina to break down over time, leading to diminished eyesight and possible blindness. There is no cure for RP, which affects 1 in 3,500 to 1 in 4,000 people in the U.S. and Europe.

Life Sciences companies often seek a better understanding of the clinical, social, and economic impacts of a rare disease such as RP – including patient outcomes, comorbidities, and total healthcare cost and resource utilization (HCRU) – which helps enable companies to weigh the value of novel interventions in development against the global burden of that disease. 

That’s what a sponsor developing a treatment for RP wanted to do when it approached Verana Health about accessing curated, de-identified data from the American Academy of Ophthalmology (Academy) IRIS® Registry (Intelligent Research in Sight). The sponsor found valuable insight from working with ophthalmology clinical data, however they wanted to better comprehend the holistic impact of RP on patients across diverse backgrounds as they seek treatments and a possible cure. 

With more than nine years of longitudinal data from more than 75 million unique patients and more than 15,000 ophthalmologists and other eye care providers, the IRIS Registry offers researchers curated, de-identified data, which helps provide insights into real-world outcomes. 

The power of linked data sources

In a new white paper, Verana Health and collaborator Datavant, discuss how the sponsor was able to leverage the IRIS Registry and a large, closed claims data source using our VeraQ® population health data engine and Datavant’s data connectivity platform for de-identifying and linking patient data.

The white paper explains:

  • The utility of linked data sources in rare disease research 
  • How VeraQ helps researchers to link multiple data sources, such as electronic health record (EHR) notes and other unstructured data, diagnostic images, claims, and genomic data
  • How tokenization better protected patient privacy and increased the project’s efficiency

Combining EHR and claims data helped enhance the depth of the available data model, providing the sponsor with valuable information about the longitudinal patient journey and unmet need. This expansive, multi-modal view of patient data enabled life sciences to measure the global burden of RP, including disease progression, impact to functional vision, and healthcare resource utilization. This analysis will go on to support the value proposition and payer narrative for future RP therapeutics. 

To learn more about the project’s methodology and results, the value of connecting data sources in a privacy-preserving manner, and how Verana Health helps life sciences sponsors access high-quality, real-world data, request a copy of the white paper here:

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