Research/Data

The National DMG Registry Web Portal consists of >300 donor demographic and critical care data points plus the recipient outcome and risk factor data elements included in the SRTR Program Specific Report Risk Adjustment Models.

The donor critical care data elements included within the DMG Registry and de-identified research dataset are listed in the DMG data dictionary and can also be viewed on the DMG Web Portal screenshot section.

The recipient and graft outcome data elements contained within the Registry include recipient/patient status, graft status, cause of death/graft failure, cold ischemia time, and delayed graft function (for kidneys).

Non-Members may request a de-identified patient-level dataset from the DMG registry for research purposes. Each organ system also has a unique dataset that includes the DMG data related only to the donors who had that specific organ transplanted as well as the donor/recipient variables included in that organ’s SRTR one-year graft survival risk adjustment model. To view the variables available in each organ specific dataset, please click on the following links for file documentation:

Current and Previous Research Collaborations:

Mild Hypothermia Trial (2012-2019)

Donor Heart Study (2014-2021)

Machine Perfusion and Hypothermia Trial (2016-2022)

Request Data:

De-Identified Dataset

Non-Members will be required to submit a brief description of their research by completing the Data Request Form and sign, and adhere to the requirements of the DUA. Please download the required forms here. Non-Members must submit requests through the contact form on our Contact page.

Data requests by non-Members must be approved by the DMG Advisory Group prior to data being released to the requestor. A data request must reflect bona fide research/analysis as described in the submitted research plan. The data cannot be used for any commercial purpose that could have a negative impact on patient welfare, such as offering, denying, or allocating insurance; and adverse selection (e.g.,identifying patients with high-risk diagnoses).

Requestor will be sent an invoice for the data request that must be paid prior to the release of the de-identified patient-level DMG dataset.

Once the DMG Advisory Group has approved the request and the non-Participant has paid UNOS for the data requested, UNOS will provide the requested data to the requestor.

Data Linkage

For each study using these linked data, researchers will be required to sign, and adhere to the requirements of the DUA and submit a brief description of their research by completing the Data Request Form. Please download the required forms here. Requests must be submitted through the contact form on our Contact page.

Requestor must obtain appropriate IRB review for the research study. Data requests for data linkage must then be approved by the DMG Advisory Group.

Requestor will be sent an invoice for the data request that must be paid prior to the release of the linked dataset. Once the DMG Advisory Group has approved the request and the requestor has paid UNOS for the data requested, UNOS will provide the requested data to the requestor.

Approved Data Requests

Evan Kransdorf, MD, PhD – Donor Management Goals and Outcomes Following Heart Transplant, 2018, California Heart Center/University Cardiovascular Medical Group.

Dieter Adelmann, MD – The effect of donor physiology and donor management on organ utilization and graft function, 2018, University of California, San Francisco.

Dieter Adelmann, MD – The effect of donor physiology and donor management on allograft function and patient and graft outcome in kidney transplantation, 2018, University of California, San Francisco.

Dieter Adelmann, MD – The effect of donor physiology and donor management on allograft function and patient and graft outcome in liver transplantation, 2018, University of California, San Francisco.

Dieter Adelmann, MD – The effect of donor physiology and donor management on allograft function and patient and graft outcome in lung transplantation, 2018, University of California, San Francisco.

Chistopher Marsh, MD – The Liver Outcome Monitoring Registry (LOMR), 2017, Scripps Transplant Program.

Dorry Segev, MD, PhD – Donor management, utilization, post-transplant outcome, and survival benefit of liver, kidney, and pancreas transplantation, 2017, Johns Hopkins Medical Institutions.

Tony Adams, MD – Vasoactive Agent Use and Effects on Organ Utilization and Graft Survival, 2017, Oregon Heath and Science University/Portland VA Medical Center.

Matthew Bloom, MD – Evaluation of Donor Steatosis and its Effects on Organ Utilization and Recipient Outcomes, 2016, and Cedar Sinai Medical Center

Aaron Spaugy, MD – Impact of Donor Demographics and Critical Care Endpoints on Lung Transplantation and Recipient Survival, 2016, Oregon Heath and Science University