1. Annual Fall Meeting November 13, 2016
6:30pm
Welcome
J. Kirklin/M. Everitt
6:40pm
Steering Committee Report
M. Everitt
6:50pm
DCC Update
J. Kirklin
7:05pm
Web Based Data Entry
D. Naftel
7:20pm
Database Committee Report
M. Richmond
7:35pm
Foundation Update
C. Collum/B. Wilk/R. Gajarski
7:50pm
Risk Factor Model
K. Schumacher
8:05pm
Heart Failure Simulation
B. Feingold
8:10pm
iPHFR
R. Gajarski
8:15pm
Break
8:30pm
Pedimacs Report
B. Blume
8:40pm
Scientific Committee Report
D. Hsu
8:50pm
Scientific Committee Sponsored Workshops
9:35pm
New Business
9:45pm
Adjourn

2. 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.
So, this is the mission statement for PHTS, established in Note how closely it mirrors our current activities.

3. UAB DCC Personnel James K. Kirklin, MD KIRSO Division Director
David Naftel, PhD
Program Director and Statistician
Craig Collum, MPH
Foundation Executive Director
Susanna Lenderman
Program Manager
Elizabeth Pruitt, MSPH
Analytic Manager
Lauren Turner
Project Coordinator
Camesha Grigsby
Data Entry Operator
Brittney Wilk
Development Director
Monica Henderson
Chase Lenderman
Website Administrator
Additional Support
Nick Timkovich
Lead Developer (WBDE)
Brandon Sharp
Developer (WBDE)
Ramaraju Rudraraju, PhD
John Pennington
Programmer
Susan Myers
Ryan Cantor, MSPH
David Helms, MA
Devin Kohl
Grant Studdard
The PHTS research efforts have a large group at UAB to draw upon for database and research analytics expertise, many of whom are available for this effort because of a majority of their funding from other sources.

4. General Report of the DCC Hospital Growth
Enrollment History of Current PHTS Hospitals
This chart depicts the growth in hospital participation over the past 23 years. So, note that we’ve grown from 15 hospitals in 1993 to 52 in 2016…

5. PHTS Participating Hospitals
United States (47 hospitals)
With wide representation from all over the US…You’ll note the carefully constructed color scheme to make sure that we don’t infer any political statement.

6. PHTS World Wide 52 Hospitals (+2 in process)
United States
Canada
Brazil
England
Japan (in process)
Australia (interested)
With additional programs in Canada ( list programs) , one in Brazil ( list) , and one in England (list). We also have a document that is nearly completed from a consortium in Japan and interest from a center in Australia ( list)
Blue=Participating hospitals
Green=Interested hospitals

7. Abstracts and Presentations
2016: Year in Review
Abstracts and Presentations
ISHLT 2016, April, Washington DC
10 presentations
5 analyses at UAB
5 limited data set requests
60 unique co-authors (representing 29 hospitals)
AHA 2016, November, New Orleans
2 presentations (analyses at UAB)
15 unique authors (representing 13 hospitals)
ISHLT 2017: Abstract Deadline October 25, 2016
6 abstracts submitted
4 analyses at UAB
2 limited data set requests
46 unique co-authors (representing 28 hospitals)
We have had a productive year in abstract presentations….read.

8. Impact of PHTS Research on Heart Transplant Community
This is a depiction of presentations ( red) and public (blue) Discuss #s: presentations/yr, 4public’s/yr; /yr pres, 5/yr pubs; recently 7-12 pres/yr, 7-8 pub/yr

9. PHTS Membership Writing Group Distribution
Publications and Abstracts:
70 Publications: 51 Unique First Authors
177 Total Unique co-authors
109 Abstracts: 73 Unique First Authors
256 Total Unique co-authors
Impressive overall track record in abs/pubs

10. Research Challenges Submitting few papers at time of meeting
Unintended consequences:
- Slow submission leads to risk of data becoming out of date with resultant request for “updated” analyses
- Invades time needed for current analyses and abstract development
- Promotes a culture of lack of discipline in designing (at the outset) the original study in a way that accurately and completely drives the analytic plan
However, we continue to have challenges in turning presentations into publications in a timely fashion. So, our goal is always to turn in a manuscript at the time of presentation. The importance of this relates directly to our ability to efficiently move other projects into the cue . …

11. Limited Data Set Request
2016 Year in Review
Limited Data Set Request
Announced to membership September 25, 2013
Limited data set sent to requesting center
Analyses performed at requesting center
Fee for request: $5,000
2013 submitted request: 1
2014 submitted request: 4
2015 submitted request: 3
2016 submitted request: 1
An important strategy to increase the number of studies and publications is outsourcing limited or “de-identified” data sets. Discuss Limited Data Sets ( make sure this is de-identified data sets) . Daphne Hsu will discuss in more detail

12. Limited Data Set Request
Policy and Procedures
Purpose to increase scientific productivity and to make data available to members
De-identified dataset specific to the approved proposal is provided to investigators for one analysis, abstract, and manuscript
Goal of PHTS to provide
High quality research
Research equity to all members in good standing who actively participate in data submission
Limited Data Sets

13. Scientific Committee Mentorship Program
“More experienced participants on this committee will bring the required skillset to successfully conduct the research studies evidenced either by advanced training in health outcomes research and/or an established track record of high quality peer reviewed publications in journals such as AJT, Circulation, JHLT, etc. This will facilitate the development of high quality project proposals and learning by those with less experience.”
- Rob Gajarski, PHTS Past President, Strategic Redesign of Scientific Investigation through the PHTS (2015)
MENTORSHIP PROGRAM. Is this a quote from Gajarski? What year did this start?

14. Investigator Visits to UAB
2016 Year in Review
Investigator Visits to UAB
January 11-12: Melanie Everitt, Daphne Hsu (Leadership Visit)
February 19: Kurt Schumacher & Charlie Canter (Risk Factor Model)
March 22: Bob Morrow, Joshua Sparks (Diabetes Post Transplant)
March 28: Bibhuti Das (Donor Crossmatch)
September 27: Jennifer Conway, Elfi Pahl (ECMO vs VAD <10kg)
September 28: David Sutcliffe, Betsy Blume
Find out which of these were de-identified data sets sent out.

16. ISHLT 2017 Abstract Submission
Analyses at UAB
Mechanical Circulatory Support (MCS) in Infants with Congenital Heart Disease listed for heart transplant - A PHTS Multicenter Experience
Jennifer Conway, MD Stollery Children’s Hospital, University of Alberta
Post-Transplant Outcomes in Pediatric VAD Patients: A Pedimacs-PHTS Linkage Study
David Sutcliffe, MD
Children’s Health Dallas, University of Texas Southwestern
The long-term outcomes of patients supported with the Berlin Heart EXCOR as a bridge to transplantation: A multi-institutional study
Aamir Jeewa, MD
Hospital for Sick Children
Association of Insurance Coverage on the Development of Coronary Allograft Vasculopathy after Pediatric Heart Transplant
Elizabeth Pruitt, MSPH
University of Alabama at Birmingham
CHECK WHERE JENN CONWAY IS

17. ISHLT 2017 Abstract Submission
Limited Data Set Request
HLA Eplet Mismatching Is Associated with Increased Risk of Graft Loss in Pediatric Heart Transplant Recipients
Erin Albers, MD Seattle Children’s Hospital
Hemodynamics of the Pediatric Failing Fontan
John Dykes, MD
Lucile Packard Children’s Hospital at Stanford
Check this- a prior slide indicates that there was 1 in 2016? Are these approved?

18. Looking Ahead: 2017 Goals Research Proposals AHA ISHLT
Proposal Deadline: October 2016
Abstract Submission Deadline: June 2017
Number of proposals to be accepted: 2
Number of writing group members to be assigned: 10
Number of centers to be represented: 10
ISHLT
Proposal Deadline: March 2017
Abstract Submission Deadline: October/November 2017
Number of proposals to be accepted: 4
Number of writing group members to be assigned: 20
Number of centers to be represented: 20
Note: The DCC has agreed to analyze 6 proposals per year

19. Collaboration with UAB
We remain committed to the purposes and vision of the PHTS.
We see a bright future for this 24 year collaboration.
We are always interested in ideas to improve the clinical relevance and productivity of the PHTS and our collaboration.
Finally , just to reaffirm the commitment of UAB….