Publications & Posters

Leveraging Remote Data Capture to Generate Real-World Evidence for Clinical Transformation

Clinically significant cholestatic pruritus can be present despite normal ALP in patients with primary biliary cholangitis (PBC) - insights from the PicnicHealth PBC registry

Treatment Patterns and Changes in Health States in Pediatric Patients with Classic Congenital Adrenal Hyperplasia: An Analysis of Data from the CAHtalog™ Registry

Optimizing EHR Data Completeness: A Conceptual Framework for Bringing Real-World Data into Clinical Research through Relevant Completeness

A Comparison of Single-Network and Multi-Site Approaches to Real-World Data Collection

Empowering Patients in Observational Research: Leveraging Data Insights for Sustained Engagement and Innovation

Evaluating Electronic Data Network and Direct Facility Retrieval Data Sources for Improved Patient Record Capture in Observational Studies

Real-World Patterns of Additional Factor Treatment Use Among Hemophilia a Patients on Regular Prophylaxis in the United States: Results from the PicnicHealth Database

Preliminary Analysis of Sociodemographic and Clinical Characteristics of Patients with Early Breast Cancer in the Patient-Centered, Real-World EVOLVE Registry

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)

Negative Impact of Supraphysiological Glucocorticoid Dosing on Growth and Changes in Glucocorticoid Dose and Androstenedione Health States in Patients with Classic Congenital Adrenal Hyperplasia: Results from the CAHtalog™ Patient Registry

Cognitive Impairment in Huntington's Disease: An incomplete picture in medical records

Pruritus impacts health-related quality of life (HRQoL) and sleep for patients with primary biliary cholangitis (PBC) in the patient-centric PicnicHealth registry

LLMD: A Large Language Model for Interpreting Longitudinal Medical Records

Patient journey in Huntington’s Disease: Using a real-world registry to understand treatments, symptoms and care patterns

Race and Sex differences in healthcare resource utilization among patients with myasthenia gravis in the United States

Multiyear, real-world, retrospective cohort study using a patient-centric approach to evaluate the burden of haemophilia B in the United States

Negative Impacts of Supraphysiologic Glucocorticoid Dosing in Patients with Classic Congenital Adrenal Hyperplasia: An Analysis of Data from the CAHtalog™ Registry

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

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

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

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

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

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

Turn the Tide in Hemophilia

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

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

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

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

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

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

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

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

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

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

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

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

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

Results from the Odyssey study: complexity of long-chain fatty acid oxidation disorder (LC-FAOD) management and patient-reported outcomes in real-world clinical practice in the USA

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

Introduction to Odyssey: Real-world rare disease data collection program for patients with long-chain fatty acid oxidation disorders in the US

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

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

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

The Neat-HER Virtual Registry: A novel registry following HER2+ ESBC patients receiving neratinib in the extended adjuvant setting

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

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

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

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