Real World Data Analysis
Photo by Tobias Fischer on Unsplash
Overview
- Real World Data (RWD) are patient-level data that originate from a variety of sources, including, but not limited to: Electronic health records (EHRs), billing claims, disease registries, and patient-generated data e.g. from mobile devices
- RWD is an important source of clinical information that can help fill knowledge gaps that result from the highly-controlled setting of sponsored-intervention studies, such as randomized-controlled trials (RCTs)
- Data collection in the heterogenous environment of the “real-world setting” (RWS) is an important complement to sponsored-intervention studies
- Nevertheless, there are significant inherent challenges of collecting highly unstructured data in the real-world setting
- Therefore, strategies to facilitate the collection of RWD are sorely needed
- Therefore, strategies to facilitate the collection of RWD are sorely needed
- Nevertheless, there are significant inherent challenges of collecting highly unstructured data in the real-world setting
- In this series of tutorial posts, weprovide a learning repository for readers to become familiar with available resources that can enhance Real World Data capture
- We cover topics aimed at optimizing instrument development in REDCap to ensure a seamless user experience/user interface (UX/UI) for data abstractors, and cover built-in tools essential to managing quality control of captured RWD
David Michael Miller
Medical Oncologist and Dermatologist
My research interests include clinical and translational research in advanced skin cancers.
Posts
Optimizing Real-World Data Collection: The Lesion Information Electronic Data Capture Instrument
We publish the data dictionary for our Lesion Information data collection instrument
Optimizing Real-World Data Collection: Genomics Electronic Data Capture Instrument
We publish the data dictionary for our genomics data collection instrument
A REDCap-to-R Pipeline for Interactive Body Map Visualizations in Cutaneous Oncology
A data science tool for interactive visualizations of skin cancer lesions
Optimizing Real-World Data Collection: Clinical Genomics
Facilitate capture of real-world next-generation genomic data
Tutorial Series on the Instruments of the Merkel Cell Carcinoma Patient Registry: Presentation and Initial Staging
Outlining the development of the “Presentation and Initial Staging Instrument” of the Merkel Cell Carcinoma Patient …
Optimizing Real World Data Collection: Flagging Prospective Records for Future Update
A proposed workflow for flagging prospective records for future updates in a patient registry hosted on
REDCap
Optimizing Real World Data Collection: Routine Maintenance of Prospective Records
A proposed workflow for monitoring completion of retrospective records in a patient registry hosted on
REDCap
Optimizing Real World Data Collection: In-Instrument Quality Control in REDCap
A proposed workflow for referral of data quality concerns in a patient registry hosted on
REDCap
Optimizing Real World Data Collection: Improving the UX/UI of REDCap via Branching Logic
A tutorial on creating and deploying branching logic on the
REDCap platform
Publications
StoryboardR - An R Package and Shiny Application Designed to Visualize Real-World Data From Clinical Patient Registries
We created StoryboardR, an R package and Shiny application facilitates the data visualization of real-world data from tumor registries …
Generalizable EHR-R-REDCap Pipeline for a National Multi-Institutional Rare Tumor Patient Registry
We present a clinical informatics pipeline designed to capture large-scale structured laboratory EHR data.
The Merkel Cell Carcinoma Patient Registry-From Promise to Prototype to Patient
We present a white paper outlining the objectives and applications of the Merkel Cell Carcinoma Patient Registry.
Diagnostic yield of staging brain magnetic resonance imaging is low in Merkel cell carcinoma - A single-institution cohort study
In the JAAD, we provide a real-world assessment of the yield of diagnostic brain MRIs in Merkel Cell Carcinoma.
GENETEX - A GENomics Report TEXt Mining R Package and Shiny Application Designed to Capture Real-World Clinico-Genomic Data
We created GENETEX, an R package and Shiny application for text mining genomic reports from EHR and direct import into REDCap®.
Clinical Utility of Cell-free DNA Liquid Biopsies in Merkel Cell Carcinoma
An examination of the clinical utility of liquid biopsies in Merkel Cell Carcinoma.
Immunotherapy for Non-Melanoma Skin Cancer
We review the latest trends in cancer care for Non-Melanoma skin cancer.
Evaluation of clinical characteristics and pre-biopsy impressions of primary Merkel cell carcinoma of the skin
A review of prebiopsy clinical DDx of primary cutaneous MCC lesions from a recent, single-institution 5 year cohort.
Immune Checkpoint Inhibition in Marjolin Ulcer - A Case Series
We provide a case series in the Journal of Immunotherapy of response to anti-PD1 therapy in Marjolin Ulcer.
Microsatellitosis in Merkel cell carcinoma - a staging quandary
We provide an analysis in the Dermatology Online Journal of microsatellitosis in a cohort of MCC patients.
Real-world assessment of response to anti-PD1 therapy in advanced cutaneous squamous cell carcinoma
In the JAAD, we provide a real-world assessment of response to anti-PD1 therapy in advanced cutaneous squamous cell carcinoma.
Clinical landscape of oncolytic virus research in 2020
We provide an overview of the clinical landscap of oncolytic virus research.
