Precision data in rare disease: Improving diagnostics, care, and discovery

Summary

For millions worldwide living with a rare disease, time is critical — yet the path to diagnosis is often long, uncertain, and filled with roadblocks. One major challenge? Diagnosis data that is vague, incomplete, or fragmented across systems. Without precise, structured information at the point of care, clinicians and researchers face delays in treatment decisions, clinical trials, and medical breakthroughs.

Join us for a panel discussion on how greater precision in diagnosis data can drive better outcomes. Experts in informatics, clinical research, and care delivery will explore the real-world impact of imprecise rare disease documentation — and how structured, specific data can accelerate diagnosis, enhance research, and improve patient care.

Objectives

Explore how clearer, more actionable insights at the point of care can improve diagnostic accuracy and care decisions
Discuss how better patient identification and cohort matching can streamline clinical trial design and launch
Examine how cleaner, more structured data can accelerate research and the development of new therapies