Publications & Posters

Progressive Supranuclear Palsy (PSP) Disease Progression, Management, and Healthcare Resource Utilization: A Retrospective Observational Study in the US and Canada

Baseline Characterization of Patient-Reported Disease Burden in a Virtual, Longitudinal Cohort of Myasthenia Gravis

Quantifying the Effectiveness of a RWD Quality Framework; A Case Study Using Paroxysmal Nocturnal Hemoglobinuria (PNH)

Real-World Clinical Characteristics and Disease Management of Immunoglobulin A Nephropathy Patients across the United States

Glucocorticoid Treatment Patterns in Pediatric and Adult Patients with Classic Congenital Adrenal Hyperplasia: Results from the CAHtalog Registry

Natural History of Classic Congenital Adrenal Hyperplasia: Results from Pediatric and Adult Patients in the CAHtalog™ Registry

Major clinical events and healthcare resource use among patients with long-chain fatty acid oxidation disorders in the United States: Results from LC-FAOD Odyssey program

Pruritus in primary biliary cholangitis is under-recorded in patient medical records

EVOLVE: An Ambispective, Patient-Centered, Real-World Early-Stage Breast Cancer Registry in the United States

Methods of Estimating Annualized Bleed Rates from Medical Records Among Patients with Hemophilia A

A Fully Enrolled, Novel, Patient-Centred Real-World Evidence Study Designed to Better Understand Active and Nonactive Progressive Multiple Sclerosis Using Health Records in the United States

Characterizing patient care before and after a myasthenia gravis diagnosis

Characteristics, Disease Burden, and Preliminary Outcomes of Patients with Myasthenia Gravis in Real-World Treatment Settings Across the United States

Alignment of Prophylactic Medication Data in Medical Records and Patient-Reported Surveys Among Patients with Hemophilia A

Exploring The Path To Diagnosis For Patients With Myasthenia Gravis Using Real-World Data

Utilization of Diagnostic Testing in Alzheimer’s Patients

Disease Modifying Therapy (DMT) Utilization and Health Care Resource Utilization (HCRU) Among Adults with Multiple Sclerosis (MS) in a United States-Based Real-World Cohort

EMPOWER AD: A NOVEL, PATIENT-CENTRIC, LONGITUDINAL, CLINICAL DATASET IN THE UNITED STATES

Common Documentation Errors in the Electronic Health Records of Persons with Hemophilia B

Treatment burden and unmet needs in hemophilia patients with inhibitors: Results from a real-world observational study in the United States

Characteristics and Healthcare Utilization of Patients with Mild or Moderate Hemophilia A in the US - An Analysis from the PicnicHealth Cohort

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 patients with pruritus and primary biliary cholangitis (PBC) in the PicnicHealth PBC cohort; contrasting medical record-documented pruritus with patient-reported pruritus from the PBC-40

Characterizing primary biliary cholangitis (PBC) patients in the real world: demographics and treatment characteristics of the PicnicHealth PBC cohort

Identifying Flares in Lupus Nephritis Patients by Combining Structured and Unstructured Medical Records with Lab Data

A Novel, Patient-Centred Real-World Evidence Study Designed to Better Understand Active and Nonactive Progressive Multiple Sclerosis Using Health Records in the United States

COVID-19 Vaccination Patterns and Outcomes Among Persons With Multiple Sclerosis in the FlywheelMS Cohort

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

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

Generating real-world data from health records: design of a patient-centric study in multiple sclerosis using a commercial health records platform

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

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

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

FlywheelMS: Stratification of anxiety and depression by MS subtype as captured in digitized health records

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

A patient-centric approach to improve the understanding of sickle cell disease using real-world data

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

Collecting real-world MRI in multiple sclerosis: preliminary results from FlywheelMS

FlywheelMS: The prevalence of multiple sclerosis subtypes in digitized health records

FlywheelMS: A Novel, patient-centered study to better understand multiple sclerosis using electronic health records and other real-world data sources