7.35 PHTS Business

DCC Update/QI D. Naftel

Database Committee R. Gajarski (W. Mahle)

Foundation Update A. Dipchand

Financial Roadmap W. Mahle

8:15Hard to Forget: The Challenge of Desensitization in Heart Transplant Candidates

Jon Kobashigawa, MD

8:45 PHTS Scientific Committee Report W. Mahle

8:50 Total Artificial Heart in Children Timothy Baldwin, PhD

9:20 Maintenance Steroids S. Auerbach

9:25 PVR M. Richmond (W. Mahle)

9:30 Adjourn W. Mahle

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.

Charges For Pediatric Heart Transplantation

Registry Database FeesInitiation Annual Fee

IMPACT $1000 $3790

INTERMACS $10,000

VPS $10,000

STS $4,000 + volume fee

CHSS $6000

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

Model for PHTS

Historical

2013

Beyond

Proposal

• 2012 fees= $2500 per center• 2013 proposal*

– $5000 per center

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

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)

2013 PHTS Projection

Current Dues Structure Revised Dues Structure

Budget $227,618.00 $227,618.00

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

• 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

2013 is PHTS’s 20th Anniversary of Data Collection!

Sunday, November 3rd, 2013

Dallas, Texas

An evening of fun, friends, reminiscing and celebration!!