Publications & Posters

Patient-Centered Data Collection Provides Comprehensive Insights into Healthcare Resource Use in Achondroplasia: Data From the Pilot Phase of the VIrtual STudy in Achondroplasia (VISTA)

Turn the Tide in Hemophilia

Real World Data: Maximizing Value and Quality Through End-to-End Patient Centricity

Characteristics and Bleeding Behavior of Females with Mild Hemophilia A: Longitudinal Study from PicnicHealth Hemophilia A Database

Multiyear, Real-World, Retrospective Cohort Study Using a Patient-Centric Approach to Evaluate the Burden of Hemophilia B in the United States

Characterizing sickle cell disease and burden of illness in the United States of America: a retrospective analysis of real-world data

Characterizing mild and moderate hemophilia A patients in the real world: a patient-centric approach

A novel methodology for building longitudinal, patient-centric real world datasets in hemophilia A

Addition of narrative text abstraction to ICD-based abstraction significantly improves identification of lupus nephritis in real-world data

Introduction to Odyssey: Real-world rare disease data collection program from digitized health records for patients with long-chain fatty acid oxidation disorders (LC-FAOD) in the United States

The Neat-HER virtual registry: Results on HER2+ breast cancer patients receiving neratinib as extended adjuvant therapy

COMMODORE Cohort: A real-world, non-interventional cohort study to evaluate the safety and effectiveness of C5 inhibitors in patients with PNH

HD Constellation: A novel patient-centered approach to enriching clinical datasets by combining medical record chart review and Enroll-HD