This document provides an overview of MyResearch and REDCap systems at UCSF. MyResearch is a data hosting service that provides a secure, HIPAA-compliant environment for storage and management of research data. It offers tools like a virtual desktop, shared drives, and data analysis software. REDCap is a web-based tool for building surveys and electronic data capture forms. It offers features like auto-validation, file uploads, and export to analysis packages. Both systems provide training through online and in-person sessions.
UCSF Informatics Day 2014 - Jocel Dumlao, "REDCap / MyResearch"
1. A Brief Overview of
MyResearch and REDCap
Systems
Jocel Dumlao
Client Outreach Specialist, ARS
UCSF Informatics Day
June 10, 2014
2. Academic Research Systems
To serve the needs of the UCSF research
community by providing:
• an integrated repository of HIPAA-
compliant clinical and life sciences data
• a centralized, secure, professionally
managed infrastructure for the storage
and management of research data
2
3. What is MyResearch?
• Data hosting service
• Virtual desktop environment
• Secure, HIPAA-compliant
• Collaborative - for UCSF researchers, staff, and
affiliates
• Cost?
Why MyResearch?
• Security, data protection
• Solution to prevent data breaches
3
6. Continuous Improvements
• VMWare Horizon View Client
• MyTransfer
• A new, web-based file transfer tool
• New software & tools added to the Toolbox:
• Newest additions: R, MatLab
• SPSS v. 21 and Missing Values, Categories and AMOS modules
• Stata SE version 13
• SAS 9.4
• TreeAge 2013
• Cohort Selection Tool, Dental Data Explorer, UC ReX,
Research Data Browser
6
10. Clinical Data Research Request
• Submit a request for restricted identified
data, summary statistics
• Will require CHR approved protocol
• Programmer will work on the request and
deliver data to your MyResearch account
• Currently no cost – recharge to begin in
summer/fall 2014
10
11. 11
What is REDCap?
• Building surveys and
data collection forms
• Rapid development
• Web-based, Secure,
HIPAA-compliant
• Reliable, Available
• For UCSF
researchers, staff, and
affiliates
• Cost?
12. 12
• 1,055 organizations in 81 countries for more
than 115,000 projects by over 149,000 users
• At UCSF, 3,089 users with 3,409 projects
13. 13
• Types of projects:
• Single or Multiple Surveys projects
• Traditional projects - classic model with data entry
forms
• Longitudinal – multi-use data entry forms, abstract
time points
• Longitudinal Project + Scheduling module - multi-
use data entry forms, defined time points
15. 15
• Features:
• Auto-validation, calculated fields, file uploading,
branching/skip logic, and survey stop actions
• Manage a contact list of survey respondents or create a
simple survey link
• Export data to common data analysis packages
• Modules include Scheduling, Randomization, Data
Resolution Workflow
• Ad Hoc Reporting
• Data Access Groups
• Continuous improvement: last upgrade was on May 22
16. Training
16
ARS offers training in REDCap and MyResearch:
• MyResearch 101 Overview
• Getting started with MyResearch and using the major tools
• REDCap 101 Beginner
• Creating/editing data collection instruments
• REDCap 202 Intermediate
• How to use REDCap tools and apps to get more from your
project
Each class is usually held twice a month. Both traditional classroom and
webinar sessions are available. For schedules and registration, log in to
https://learningcenter.ucsfmedicalcenter.org or contact
its-arssupport@ucsf.edu for assistance.
• REDCap/MyResearch Drop-In Clinics
• Last Wednesday of each month, 11am to 1pm, rotating locations
18. Academic Research Systems
18
Jocel Dumlao
Client Outreach Specialist
Phone: (415) 502-2105
Email: jocel.dumlao@ucsf.edu
Group Email: its-arssupport@ucsf.edu
Notes de l'éditeur
Overview of MyResearch and REDCAP - 2 applications to help researcher collect, store, manage, and analyze data.
Informal poll – quick show of hands
To begin, present our group mission – to enable medical research and help UCSF advance health worldwide
Doug Berman, our deputy director, presented data access tools to leverage the integrated data repository
My presentation is about the second part of our mission which is about storage and management of your data
Data Hosting Service; MyR is a professionally managed, secure, web based, virtual environment to store and manage your research data and other sensitive data, like PHI.
Why? MyR was conceived and developed after repeated data breaches: lost or stolen computers
Toolkit – different types of statistical software, Atlas TI, SPSS, Stata, TreeAge, diff flavors of SAS, new addition Matlab and R
Microsoft Sharepoint, Data Access tools
In addition to the toolkit, you also have your secure shared drive
Access is provided only to those individuals you have approved
Further limit access to certain folders by configuring Windows folder permissions
A major upgrade is VMWare Horizon View Client.
Significant change how users interact w/ MyR – faster, more powerful, user-friendly, access on portable dev
MyTransfer – web-based, user friendly, secure method to upload
A tool to query the IDR – de-identified copy of APEX and Dental Clinic DB,
Simple easy to use click & drag interface to build query: left side – standard ontologies ICD-9, CPT codes
Ex: adult patients, speak English, diagnosed with urinary symptoms, bottom right: 5 secs, over 12000
University of California Research Exchange, an initiative of UCBraid and the 5 UC Medical Campuses: Irvine, UCSF, UCLA, Davis, UC San Diego; provides access to 12 million de-identified patient records
Ex: patients between the age of 35 to 44 who has been diagnosed with breast cancer
Launched today at this event; Dana Ludwig is giving a presentation on this tool this afternoon.
Queries the de-identified APEX db but presents data graphically. Uses native APEX terminology, provides more information and complexity and allows users to dig deeper into the data
Need restricted identified data
Implementing a recharge policy in late summer/early fall
Halfway through
Research Electronic Data Capture - a secure, web-based application for building and managing online surveys and data capture forms.
UCSF part of consortium of over 1000 organization around the world; in March, a little over 800 organizations
UCSF and our partners constitute about 2% of all users worldwide.
Create different types of projects in REDCap, from something as simple as a single survey to something complex like a longitudinal project with a scheduling and randomization module.
Longitudinal project: looks very similar to a schedule of events.
21 different data collection forms. Some have a couple of questions; others have nearly 100 variables. Create forms only once. You can add events or visits in REDCap and specify which forms to use at those events.