1. Annual Spring Meeting April 26, 2016 7:00pmWelcomeM. Everitt 7:05pmSteering Committee UpdateM. Everitt 7:15pmDCC UpdateD. Naftel/ S. Lenderman 7:30pmWeb Based Data Entry UpdateD. Naftel/ S. Lenderman 7:40pmDatabase Committee UpdateM. Richmond 7:55pmMATE Project OverviewC. Almond 8:00pmBreak 8:15pmPedimacs ReportD. Rosenthal 8:25pmFoundation UpdateR. Gajarski 8:35pmScientific Committee UpdateD. Hsu 8:45pmScientific Committee Sponsored WorkshopD. Hsu 9:35pmLimited Data Set Request SOPM. Everitt 9:40pmNew Business 10:00pmAdjournM. Everitt

2. Scientific Committee Sponsored Practice Variation Workshop Daphne Hsu, MD David C. Naftel, PhD April 26, 2016

3. Variability among the hospitals in Pediatric Transplantation Patient Selection Donor Selection/ Availability Outcomes Post Transplant PHTS Data Capture Evolution Outcomes Post Listing Hospital Transplant Team Changes Therapies While Listed Therapies Post/Peri Transplant

4. Variability among the hospitals in Pediatric Transplantation Patient Selection Donor Selection/ Availability Outcomes Post Transplant PHTS Data Capture Evolution Outcomes Post Listing Hospital Transplant Team Changes Therapies While Listed Therapies Post/Peri Transplant Today’s Discussion

5. Variability among the hospitals in Pediatric Transplantation Patient Selection Donor Selection/ Availability Outcomes Post Transplant PHTS Data Capture Evolution Outcomes Post Listing Hospital Transplant Team Changes Therapies While Listed Therapies Post/Peri Transplant Each source of “variability” interacts with all of the other sources.

6. Evolution of PHTS Data Collection Forms 199319961999200520102015 Screening Log Demographics Form 1 Listing Form 1RL Re-Listing Form 1t Transplant Form 2 Donor Form 3 Initial Immunosuppression Form 4 Coronary Evaluation Form 5 Rejection Form 6 Infection Form 7 Malignancy Form 8 Post Tx Annual F/up Form 9 Coronary Revascularization Form 10 Death Form 11 Retransplant Form 12 Pre Tx Annual F/up Form 14 Dialysis/Renal Transplant Form 15 MCSD Form 16 Anti HLA Anti Bodies

7. Delphi Method

8. RAND developed the Delphi method in the 1950s, originally to forecast the impact of technology on warfare. The method entails a group of experts who anonymously reply to questionnaires and subsequently receive feedback in the form of a statistical representation of the "group response," after which the process repeats itself. The goal is to reduce the range of responses and arrive at something closer to expert consensus. Source: http://www.rand.org/topics/delphi-method.htmlhttp://www.rand.org/topics/delphi-method.html

9. Evidence Based Medicine The conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients.

10. Standardization Practice Workshop The goal of these working groups is to try to harmonize our practices and make up to 4 protocols for each of the clinical scenarios we are discussing (immunosuppression, rejection, graft vasculopathy). The goal is to have centers that have similar approaches agree on things such as doses, treatment duration, target levels, etc so that when we want to compare outcomes we have more confidence that patients who are receiving, for instance “induction therapy”, would be similar across centers because the dose and duration of ATG, target tacro levels, cellcept doses would be agreed upon by the centers. If centers are using another induction agent, then the dose and duration of treatment would be agreed upon as well. Goals

11. Standardization Practice Workshop We are looking for broad representation with centers sharing their protocols to get them written down and shared with the entire PHTS community for comment. Once we reach consensus these would be posted on the website could be accessed by sites who could then choose what protocols they would like to adopt. Obviously using as much evidence as we can find is important, but evidence will be limited, so I think the protocols will be developed by consensus. Goals