Pediatric Inflammatory Bowel Disease Registry (Pilot)
REDCap Registry Features
Modular design using baseline + longitudinal forms
Core Intake captures demographics, diagnosis, medications, and family history
Pre-Visit Survey gathers patient-reported outcomes before each visit
Visit Data includes:
– Stool patterns and weight change
– Medication/supplement use
– Disease activity indicators
Repeating logs: Surgery Log, Bone Age Log, DEXA Log, Fracture Log
Logic-driven branching and dropdowns for standardized, efficient data entry
Structured for OMOP CDM alignment and scalable multi-site use
RedCap Features
Custom Visit Labels:
Repeating forms use descriptive labels (e.g., “Visit on 2025-06-01 – Weight: 37.2 kg”) to improve clarity and usability on the Record Home Page.
Automated Disease Activity Scoring:
PUCAI and wPCDAI scores are automatically calculated during each visit using structured clinical inputs, ensuring accuracy and consistency in disease severity tracking.
Branching Logic & Conditional Visibility:
Forms display only relevant fields based on patient characteristics (e.g., menarche history shown only for females, PUCAI only for UC patients), reducing errors and streamlining data entry.
OMOP Mapping for Interoperability:
Core variables are mapped to OMOP CDM tables (e.g., PERSON, MEASUREMENT), with concept IDs embedded directly into the form or tracked in an external mapping sheet for more complex fields.
Tracks growth, labs, and disease activity over time
Visualizes trends across clinical visits
Built with Looker Studio for real-time insight
Backed by OMOP-standardized REDCap data
Currently under pilot testing with children's national medical center. Designed to be scalable across different hospitals and
clinic systems.
Dashboard
Project Overview
As part of a research initiative at Children's National Hospital, I led the development of a hybrid patient registry for pediatric patients with IBD, focused on growth outcomes, delayed puberty, and bone health. This registry integrates both patient-reported outcomes and clinically abstracted EMR data to support research and quality improvement (QI) in pediatric IBD care.
Project
REDCap, SQL, OMOP CDM, Python, FHIR, Looker
Tech Stack
Children with Crohn’s Disease and Ulcerative Colitis often experience growth delays, delayed puberty, and bone density issues; yet these are inconsistently tracked in routine care.
This registry bridges that gap by capturing growth- and bone-health-specific data over time to inform both treatment and research.
Why It Matters
We built a REDCap-based hybrid registry that captures both patient-reported and EMR-abstracted data, tracking growth, disease activity, medications, and imaging over time. With built-in eligibility checks and OMOP alignment, it supports real-time insights and scalable, multi-site research.