Real World Data

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.

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.

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.

Data Quality Improvement in Cancer Registries- Error-Injection Tests

A proposed workflow for monitoring completion of retrospective records in a patient registry hosted on `REDCap`

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.

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.

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 Registry

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`