The Rare Disease Data Crisis: 80–90% Invisible. 100% Impactful.
Above the Waterline (What You See):
Claims & EMR data covering only 10–20% of ultra-rare patients.
Average 5–7 years from symptom to diagnosis.
Small populations: fewer than 20K subpopulations per rare oncology disease.
Below the Surface (The Hidden Crisis):
18–24 months of delays in a traditional study, $15–50M in cost.
Every month of delay = lost survival in small patient pools.
Payers demand outcomes data. FDA needs a natural history for accelerated approval.
That iceberg isn’t just a visual; it’s the reality sinking trials, HEOR, and market access strategies.
80–90% of patients stay buried in clinician notes, PROs, genomics, and unstructured data. Invisible to traditional pipelines. Inaccessible to most AI tools.
Clinakos breaks the ice.
Clarion™, our AI Research Agent, is purpose-built to surface those hidden patient linking fragmented sources into complete, longitudinal patient journeys that traditional methods never reach.
Powered by Integrated Patient Data™ and Medically Smart AI™ agents:
→ 10x richer patient profiles with notes, imaging, and patient-reported realities
→ Full longitudinal journeys from fragmented sources
→ Regulatory-grade RWE across 1,500+ rare panels, 70–85% faster, trial-ready
Life sciences, biotech, CROs, consultancies: Stop scraping the tip. Dive into the data that drives decisions.
📩 Message us or check our disease panels for a custom rare disease data deep-dive on your portfolio. Let’s make the invisible… actionable.
