1. Agenda 8:00pm Welcome Marc Richmond / Elfi Pahl 8:10pm
Steering Committee Report
Marc Richmond
8:20pm
DCC Update
James Kirklin / Nick Timkovich
8:40pm
Database Committee Report
Jennifer Conway
8:55pm
Quality of Life Update
Karen Uzark
9:00pm
Foundation Update
Craig Collum
9:10pm
Scientific Committee Report
Elfi Pahl
9:20pm
Enduring Hearts
Bob Boucek
9:25pm
New Foundation Officers
Melanie Everitt
9:30pm
Adjourn

2. Thank you to our sponsor!
4/4/2019

3. PHTS Purpose (Est. 1993)
The purposes of the group are to establish and maintain an international, prospective, event driven database for heart transplantation, to use the database to encourage and stimulate basic and clinical research in the field of pediatric heart transplantation and to promote new therapeutic strategies.
4/4/2019

4. 1993 2003 2013 Today Institutions 21 25 46 56* Countries 1 2 3 4
PHTS Continues to Grow
1993
2003
2013
Today
Institutions 21 25 46
56*
Countries 1 2 3 4
Listings
236
2513
6695
8901
Transplants
140
1736
4816
6562
Abstracts - 26 87
123
Publications 9 57 86
Newest Hospitals Enrolled: UCSF-Benioff Children’s Hospital and Children’s Hospital MN

5. 2017 Pediatric Transplants
US Hospitals (50)
431
Reported by UNOS for all pediatric heart transplant centers
400
Reported by UNOS for PHTS Centers
93%
Potential percentage of all US pediatric heart
transplants if all PHTS centers report 100% of individual center transplants*
378
Reported to PHTS for the calendar year 2017
88%
of US transplants (no informed consent, not eligible)
*some patients may be ineligible

6. Building a Better Dataset
Steps for rigorous data entry and checking
Work closely with coordinators to ensure timely and complete data submission
Regularly scheduled data consistency checks
Work with coordinators to correct errors or enter missing forms
Check number of transplants reported to UNOS by institution for US hospitals and with PIs for non-US hospitals

7. Building a Better Dataset
Inclusion Criteria for Research Datasets: 90% Rules
90% compliant with all listing forms
90% compliant with all transplant, donor, and immunosuppression forms
90% compliant with all annual follow-up forms
90% compliant with all event forms
Addressed all data queries
In process of incorporating these compliance scores into the data entry system for real time visualization
2018: 100% of active centers compliant

8. Building a Better Dataset
Form revisions 1993, 1996, 1999, 2005, 2010, 2015
2015: Web Based Data Entry System Launch
DCC Data Manager checking all variables across all form revisions
Major mapping issues / form changes
VAD and ECMO previously on listing and transplant form, moved to MCSD form
Revisions to inclusion criteria
Estimated Completion of Mapping Project: Spring 2019

9. Data Submission Deadlines
Event Occurrence
Months
Absolute Submission Deadline
1st Quarter
January
February
March
April 30
2nd Quarter
April
May
June
July 31
3rd Quarter
July
August
September
October 31
4th Quarter
October
November
December
January 31

10. Quality Assurance Reports
Reports including events through
June 30, 2018 will be available
December 2018

11. New Reporting Features in PHTS Wed-Based Data Entry
Nick Timkovich Director of Database Development, Management & Reporting
UAB KIRSO
4/4/2019

12. PHTS Reporting Features
Overview
Data Download (2019) Sites can retrieve all data in bulk that they own in the WBDE
Clinical Summary Report (2019) Single PDF of all details of a single patient
Cohort Comparison (2019) Compare multiple cohorts of patients for specific data elements frequencies
Outcome Analytics (Future) Survival Curves, Competing Outcomes, etc. based upon user-selected cohorts
4/4/2019

13. PHTS Reporting Features
Data Download
Form by form download of all data entered by the site
Excel files that contain:
Common information, such as Patient identifiers, site identifiers, system columns (unique identifiers for each form, tracking information, etc.)
ALL data from the form
4/4/2019

14. PHTS Reporting Features
Data Download
4/4/2019

15. PHTS Reporting Features
Clinical Summary Report
PDF file of clinical data for a single patient.
All relevant information for that patient in one place.
Phase 1:
Single button to open from Dashboard or Patient Summary
Customizable charts
Expand/Collapse sections
4/4/2019

16. PHTS Reporting Features
Cohort Comparison Report
PDF of basic summary data for User-selected Cohorts Bar charts for frequencies, tables of raw data
Three options:
Single Cohort ex: Males, Age at Listing = 1 to 6 months, Cardiomyopathy
Two Cohorts within your site ex: Males vs Females, Age at Transplant = 1 year to 6 years.
Single Cohort comparing your site to the aggregate ex: NYHA Class 1 at your center vs all centers
4/4/2019

17. PHTS Reporting Features
Outcomes Analytics
Advanced Analytics based on user-selected criteria, generating charts, graphs, and other elements to convey outcome-related information
Kaplan Meier Survival Curves
Competing Outcomes
Risk-adjusted Models
Other options to be determined
Real-time generation of reports (PDF) based on checked data
Tailored to needs of the PHTS community
Future release of PHTS, depending on input from leadership and community
4/4/2019

18. PHTS Reporting Features
THANK YOU
4/4/2019