Guidelines for Registry Development: National Forum

November 29-30, 2001

The goal of the forum was to develop a set of guidelines intended to assist governments or private organizations interested in strengthening existing donor registries or developing new registries and to discuss potential Federal roles in improving registry effectiveness. Participants included representatives of organ and tissue procurement organizations, State governments, and national transplantation and legislative organizations.

Recommendations

1. Make Organ Donation a Public Health Imperative
2. Clarify Consent vs. Intent
3. Retain and Respect State Autonomy
4. Do Not Establish a National Registry at this Time
5. Define the Federal Role
6. Minimize Public Confusion
7. Provide Opportunities for the Public to Register
8. Continue Ongoing Evaluation and Accountability of Registries

Reports

• Guidelines for Registry Development: Final Report
  August 2002
  
  • Executive Summary
  • Full Report (Adobe Acrobat — get the free Reader)
  
  

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