Goals

1
PHTS Fall Meeting November 4, 2012
7.35 PHTS Business
DCC Update/QI D. Naftel
Database Committee R. Gajarski (W. Mahle)
Foundation Update A. Dipchand
Financial Roadmap W. Mahle
815 Hard to Forget The Challenge of Desensitization in Heart Transplant Candidates Jon Kobashigawa, MD
845 PHTS Scientific Committee Report W. Mahle
850 Total Artificial Heart in Children Timothy Baldwin, PhD
920 Maintenance Steroids S. Auerbach
925 PVR M. Richmond (W. Mahle)
930 Adjourn W. 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
Initiation Annual 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
PHTS Foundation 2013 Budget Projections
2013 PHTS Projection 2013 PHTS Projection
Current Dues Structure
Budget 227,618.00

Revenue and Other Support 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
PHTS Foundation 2013 Budget Projections Revised
2013 PHTS Projection 2013 PHTS Projection 2013 PHTS Projection
Current Dues Structure Revised Dues Structure
Budget 227,618.00 227,618.00

Revenue and Other Support Revenue and Other Support Revenue and Other Support
Hospital Dues 107,500.00 215,000.00
Donations 20,000.00 20,000.00
Sponsorship Revenue 20,000.00 20,000.00
Meeting Fees 7,500.00 7,500.00
UAB Contribution 62,500.00 62,500.00
Revenue Subtotal 217,500.00 325,000.00
Ending Balance (10,118.00) 97,382.00
11
PHTS Foundation 2013 Moving Forward

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

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