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Modify the Deceased Donor Registration (DDR) Form

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eye iconAt a glance

Current policy

Organ Procurement Organizations (OPOs) are required to submit a Deceased Donor Registration Form (DDR) for every deceased donor. This information is used by the OPTN and the Scientific Registry of Transplant Recipients (SRTR) to review transplant system performance and patient outcomes. The DDR has not been formally reviewed in more than 10 years. In 2020, the OPO Committee reviewed the form to identify any needed changes to improve data collection.

Supporting media

Presentation

View presentation slides

Proposed changes

  • Promote more consistent and accurate data collection by modifying, removing or relocating data elements.
  • Improve the quality of data and provide OPO staff with better direction and clarity for data entry.

Anticipated impact

  • What it's expected to do
    • Improve the accuracy and consistency of the data by clarifying data element definitions
    • Remove data elements that are no longer useful
    • Improve OPO operations
    • Seek feedback on specific data elements
      • Recovery date
      • Citizenship
      • Donor Management
      • Number of transfusions during terminal hospitalization
      • Confirmation of clinical infection
      • Cocaine and other drug use
      • DCD withdrawal serial data
      • Tuberculosis and Chagas history
  • What it won't do
    • Will not add data elements
    • Will not increase administrative burden for OPOs

Themes

  • Consistent and accurate data collection

Terms to know

  • Deceased Donor Registration Form (DDR): a record of donor information completed for all deceased donors from who at least one organ has been removed for the purposes of transplantation.
  • Scientific Registry of Transplant Recipients: An organization that supports the transplant community with analyses, in an effort to better patient results and experience. Through the evaluation of national data collected by the OPTN, their program-specific reports provide wide-ranging information about transplant programs and their results.
  • Organ Procurement Organization: An organization designated by the Centers for Medicare and Medicaid Services (CMS) and responsible for the procurement of organs for transplantation and the promotion of organ donation.
  • Final Rule: defines a standard framework for policies, requiring the OPTN to establish Policy Criteria, Policy Objectives and Performance Measures with procedures for continuous evaluation and reporting.
  • Histocompatibility Laboratory: A laboratory that types candidates and donors for HLA molecules (by DNA and serologic methods). The laboratory collaborates with the Transplant Team in the pre and post-transplant immunological risk assessment to avoid antibody-mediated graft rejection and to monitor treatment.
  • Transplant Hospital: A hospital that performs transplants, including qualifying patients for transplant, registering patients on the national waiting list, performing transplant surgery and providing care before and after transplant.
  • Click here to search the OPTN glossary

eye iconComments

Paul Schwab | 01/23/2021

It is ironic that "citizenship" is on the DDR form but a "citizenship question" has not been on a US Census survey sent to 100% of households since 1950. I don't see any medical or performance assessment rationale in keeping citizenship data regarding deceased donors. I do recall one non-medical use of the data, however, when I was the AOPO Executive Director. Specifically, with regard to those persons/organizations who objected to non-citizens receiving transplants, UNOS was able to defuse the objection somewhat by showing that the number of non-citizen deceased donors was higher than the number of non-citizen transplant recipients.

Anonymous | 01/27/2021

Strongly support removal of “recovery date” and use only cross clamp date/time. As mentioned, this often leads to confusion especially with determining 14 day disposal date for stored extra vessels.

Region 4 | 02/04/2021

Region 4 sentiment: 3 strongly support; 12 support; 2 neutral/abstain; 0 oppose; 0 strongly oppose. Region 4 had no comments for this proposal.

OPTN Operations & Safety Committee | 02/10/2021

The Operations and Safety Committee thanks the OPTN Organ Procurement Organizations Committee for their efforts in developing this special public comment proposal for the Modify the Deceased Donor Registration Form. The Committee supports the removal of recovery date. The Committee supports collecting more granular information on clinical infections confirmed by cultures. The Committee supports an updated list of medications and suggests adding the ability to rapidly add medications to the drop down selection. Additionally, members support collection of transfusion volume instead of number of transfusions. The Committee supported the simplification of the “other drugs” section. The Committee suggested a middle ground to be found regarding uniform donor risk assessment interview (URDAI), because the current loose nature of the data capture is problematic from a data use standpoint. The Committee supported the collection of Chagas and Tuberculosis history. The Committee added that data collection for Strongyloides history could be beneficial as well. The Committee suggested possible data elements could include geographic location or country of origin, whether the patient was potentially exposed, when the patient was diagnosed, when the patient was treated, and type of treatment. The Committee expressed interest in a more standardized approach for data collection concerning which drips the donor is on when an echocardiogram is performed. The Committee suggested that data related to donor after cardiac death (DCD) withdrawal should be collected for a period of time leading up to the agonal phase and then after the agonal phase. The Committee does not support the removal of the citizenship status field as some institutions utilize the deceased donor citizenship status for research purposes.

Region 3 | 02/18/2021

Region 3 sentiment: Strongly support-3, Support-15, Neutral/abstain - 1, Oppose - 0, Strongly Oppose – 0. This was not discussed during the meeting but OPTN representatives were able to submit comments with their sentiment. Two members provided feedback that citizenship should not be collected. Other feedback provided was that cross clamp date and time should be included rather than both cross clamp and recovery, the list of medications should be removed, transfusions during donor management is most important, and that no additional data for Chagall or TB is needed.

Region 5 | 02/19/2021

Region 5 sentiment: 3 strongly support, 21 support, 4 neutral/abstain, 0 oppose, 0 strongly oppose. No comments or questions