1. 7.35PHTS Business DCC Update/QID. Naftel Database CommitteeR. Gajarski (W. Mahle) Foundation UpdateA. Dipchand Financial RoadmapW. Mahle 8:15 Hard to Forget: The Challenge of Desensitization in Heart Transplant Candidates Jon Kobashigawa, MD 8:45PHTS Scientific Committee ReportW. Mahle 8:50Total Artificial Heart in ChildrenTimothy Baldwin, PhD 9:20Maintenance SteroidsS. Auerbach 9:25PVRM. Richmond (W. Mahle) 9:30AdjournW. Mahle

2. Goals PHTS is dedicated to the advancement of the science and treatment of children during listing for and following heart transplantation. 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.

3. Charges For Pediatric Heart Transplantation

4. Registry Database Fees InitiationAnnual Fee IMPACT$1000$3790 INTERMACS$10,000 VPS$10,000 STS$4,000 + volume fee CHSS$6000

5. Costs for Registry Participation Data entry costs typically far exceed annual fees For most registries including PHTS annual fees probably only comprise 5-15% true participation costs – Bad economics Weeks of work for transplant coordinator entering data into a registry without adequate infrastructue

6. Model for PHTS Historical 2013 Beyond

7. Proposal 2012 fees= $2500 per center 2013 proposal* – $5000 per center

8. How To Approach Administrators/Leadership PHTS fees consistent with other registries Services have expanded QA report Plan to move toward web-based entry in 2014 – Infrastructure costs – More flexible data retrieval and center reports

9. 2013 PHTS Projection Current Dues Structure Budget$227,618.00 Revenue and Other Support Hospital Dues$107,500.00 Donations$20,000.00 Sponsorship Revenue$20,000.00 Meeting Fees$7,500.00 UAB Contribution$62,500.00 Revenue Subtotal$217,500.00 Ending Balance(10,118.00)

10. 2013 PHTS Projection Current Dues StructureRevised Dues Structure Budget$227,618.00 Revenue and Other Support Hospital Dues$107,500.00$215,000.00 Donations$20,000.00 Sponsorship Revenue$20,000.00 Meeting Fees$7,500.00 UAB Contribution$62,500.00 Revenue Subtotal$217,500.00$325,000.00 Ending Balance(10,118.00)$97,382.00

11. Starting position budget neutral (expenses covered) Fundraising plans: 20 th Anniversary Gala Family Outreach Brochures Educational Materials Targeted Fundraising Electronic Data Entry  $20,000 by 2014 YIA

12. 2013 is PHTS’s 20 th Anniversary of Data Collection! Sunday, November 3 rd, 2013 Dallas, Texas An evening of fun, friends, reminiscing and celebration!!