1. Annual Spring Meeting April 26, 2016
7:00pm
Welcome
M. Everitt
7:05pm
Steering Committee Update
7:15pm
DCC Update
D. Naftel/ S. Lenderman
7:30pm
Web Based Data Entry Update
7:40pm
Database Committee Update
M. Richmond
7:55pm
MATE Project Overview
C. Almond
8:00pm
Break
8:15pm
Pedimacs Report
D. Rosenthal
8:25pm
Foundation Update
R. Gajarski
8:35pm
Scientific Committee Update
D. Hsu
8:45pm
Scientific Committee Sponsored Workshop
9:35pm
Limited Data Set Request SOP
9:40pm
New Business
10:00pm
Adjourn

2. Web Based Data Entry System
Initial Goal
Create and implement software for electronic entry of data
Expanded Goal
Create an electronic system
for managing data (entry, quality checks, etc.)
for managing participating hospitals and local personnel
for communication
for document delivery
for managing regulatory requirements
is FISMA/HIPAA compliant

3. What does the current system include?
WBDE Training Session
What does the current system include?
Phase I
October 1, 2015
Mirror of data collection forms
Revisit/revision of all forms
Tool for data management
Create Administrative System
Phase II
April 2016
Business rules on all forms and data fields
Phase III
November 2016
Data download of a hospital’s data
Phase IV
April 2017
Analytics: survival curves and analyses at local hospital

4. Web Based Data Entry System

5. Web Based Data Entry System
Version (Released October 7, 2015)
Version (Released October 26, 2015)
Version (Released November 5, 2015)
Version (Released November 19, 2015)
Version (Released December 31, 2015)
Version (Released March 4, 2016)
Version (Released March 28, 2016)
Version (Coming Soon)
Version (Coming Soon)

6. Web Based Data Entry System
Version 1.0.6
Session Time Remaining: 40:54

7. Web Based Data Entry System
Version (Released October 7, 2015)
Version (Released October 26, 2015)
Version (Released November 5, 2015)
Version (Released November 19, 2015)
Version (Released December 31, 2015)
Version (Released March 4, 2016)
Version (Released March 28, 2016)
Version (Coming Soon)
Version (Coming Soon)

8. Web Based Data Entry System: What’s Coming
Version 1.0.7

9. Web Based Data Entry System: What’s Coming
Version 1.0.7
Auto generation of Donor and Immunosuppression Forms

10. Web Based Data Entry System: What’s Coming
Version (Released October 7, 2015)
Version (Released October 26, 2015)
Version (Released November 5, 2015)
Version (Released November 19, 2015)
Version (Released December 31, 2015)
Version (Released March 4, 2016)
Version (Released March 28, 2016)
Version (Coming Soon)
Version (Coming Soon)

11. Web Based Data Entry System: What’s Coming
Version 1.1.0
Auto generation of Post Transplant Annual Follow Up Forms (Form 8) for all patients at the time of the yearly transplant anniversary. Forms will display in this grid on the “Site Dashboard” so as soon as coordinators log in to the system they will see which forms need to be completed for which patient.

12. Web Based Data Entry System: What’s Coming
Version 1.1.0: Filtering Site Dashboard

13. Web Based Data Entry System: What’s Coming
Version 1.1.0: Filtering Site Dashboard
Show patients
Active
Show patients
Active
Inactive
Transplanted
Alive Waiting
Transferred
Removed
Dead

14. Web Based Data Entry System: What’s Coming
What does the current system include?
Phase I
October 1, 2015
Mirror of data collection forms
Revisit/revision of all forms
Tool for data management
Create Administrative System
Phase II
April 2016
Business rules on all forms and data fields
Phase III
November 2016
Data download of a hospital’s data
Phase IV
April 2017
Analytics: survival curves and analyses at local hospital
*Phase III and Phase IV will be possible with an expansion of the PHTS mission.

15. 10th Annual Meeting: Friday, March 11th – Products for the Sites
Site Products
Available Today
Available July 1, 2016
Data Quality Report
Quality Assurance Report
Live Data Download
Site Research Datasets (SAS)
Customized Cohort Reports
Outcome Analytics
Patient Information
I. Accessing Your Data
Examining/Validating your data ü
Compliance Rates
Electronic copies of your data
II. Patient Management Tools
Clinical timeline
Clinical measures across time
III. Patient Selection and Outcomes
Quality Assurance Report
Cohort (subset) report
Benchmarking ü 
IV. Quality Initiatives
Joint Commission
Internal Iniatives
V. Using Intermacs for Your Research
Within your site
Across Intermacs
P = presentation, M=manuscript,
“In testing”
“In Development”

16. WBDE System The Dream: New Opportunities More timely data submission
Better quality data
More frequent QA reports
Unanticipated Consequences
Changing Data Entry Personnel
More People
Training WBDE
Training in PHTS
New attention from local IRB

17. WBDE System The Dream: New Opportunities More timely data submission
Better quality data
More frequent QA reports
Unanticipated Consequences
Changing Data Entry Personnel
More People
Training WBDE
Training in PHTS
New attention from local IRB

18. WBDE: Form Submission Before and After Launch
Number of Forms Entered vs Number of Centers Entering

19. Centers with No IRB Approval
WBDE Regulatory
Centers with No IRB Approval
Issues Include:
Security of data in web based system
Turnover in hospital personal
Submission of patient information

20. WBDE: Form Submission Before and After Launch
Total Listings Reported Jan 1-Mar 31, (should be about 125) Total Transplants Reported Jan 1-Mar 31, (should be about 100)