Real World Data Analysis
Last updated on
May 13, 2020

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.
Related
- Optimizing Real World Data Collection: Enhancing the UX/UI of REDCap via Field Formatting
- Optimizing Real World Data Collection: Flagging Prospective Records for Future Update
- Optimizing Real World Data Collection: Improving the UX/UI of REDCap via Branching Logic
- Optimizing Real World Data Collection: In-Instrument Quality Control in REDCap
- Optimizing Real World Data Collection: Monitoring Completion of Retrospective Records
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.
Talks
eLAB - a Large-Scale Laboratory Integration Informatics Pipeline for Clinical Research
May 17, 2021 8:30 PM — 9:00 PM
Virtual Platform
GENETEX - an NLP R Package for Text Mining Genomic Reports
May 7, 2021 8:00 PM — May 17, 2021 8:30 PM
Massachusetts General Hospital Online Forum
MCC Patient Registry - Lessons Learned on Data Capture
Feb 26, 2021 3:00 PM — 4:00 PM
Project Data Sphere Online Forum