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:

 

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

Publications Using DMG Registry Data

Achieving Donor Management Goals Before Deceased Donor Procurement Is Associated With More Organs Transplanted Per Donor – The Journal of Trauma, October 2011

The impact of meeting donor management goals on the number of organs transplanted per donor: results from the United Network for Organ Sharing Region 5 prospective donor management goals study – Critical Care Medicine, October 2012

The impact of meeting donor management goals on the development of delayed graft function in kidney transplant recipients. – American Journal of Transplantation, April 2013

Determining optimal threshold for glucose control in organ donors after neurologic determination of death: a United Network for Organ Sharing Region 5 Donor Management Goals Workgroup prospective analysis. – The Journal of Trauma and Acute Care Surgery, January 2014

The impact of meeting donor management goals on the number of organs transplanted per expanded criteria donor: a prospective study from the UNOS Region 5 Donor Management Goals Workgroup – JAMA Surgery, September 2014.

Impact of deceased organ donor demographics and critical care end points on liver transplantation and graft survival rates – Journal of American College of Surgeons, January 2015.

Therapeutic Hypothermia in Deceased Organ Donors and Kidney-Graft Function – New England Journal of Medicine, July 2015.

The Impact of Hydroxyethyl Starch Use in Deceased Organ Donors on the Development of Delayed Graft Function in Kidney Transplant Recipients: A Propensity-Adjusted Analysis – American Journal of Transplantation, August 2015.

The impact of blood transfusions in deceased organ donors on the outcomes of 1,884 renal grafts from United Network for Organ Sharing Region 5. – The Journal of Trauma and Acute Care Surgery, October 2015

Patients on state organ donor registries receive similar levels of intensive care compared to those who are not: an opportunity to increase public intent to donate – Clinical Transplantation, June 2016.

Deceased Organ Donor Management: Does Hospital Volume Matter?  – Journal of American College of Surgeons, March 2017

Active Donor Management During the Hospital Phase of Care Is Associated with More Organs Transplanted per Donor. – Journal of American College of Surgeons, October 2017

Deceased organ donor factors influencing pancreatic graft transplantation and survival. – Clinical Transplantation, June 2019

Therapeutic Hypothermia in Organ Donors: Follow-up and Safety Analysis. – Transplantation, November 2019

The role of deceased donor liver biopsy: An analysis of 5449 liver transplant recipients. – Clinical Transplantation, May 2020

Vasopressor selection during critical care management of brain dead organ donors and the effects on kidney graft function. – The Journal of Trauma and Acute Care Surgery, June 2020

Impact of Deceased Donor Management on Donor Heart Use and Recipient Graft Survival. – Journal of American College of Surgeons, September 2020

Machine Learning Prediction of Liver Allograft Utilization From Deceased Organ Donors Using the National Donor Management Goals Registry. – Transplantation Direct, September 2021

Organ donor management goals and delayed graft function in adult kidney transplant recipients – Clinical Transplantation, November 2021

Critical care and ventilatory management of deceased organ donors impact lung use and recipient graft survival. – American Journal of Transplantation, December 2021

 

Other DMG Related Publications

Attaining specific donor management goals increases numbers of organs transplanted per donor: a quality improvement project. Progress in transplantation, 2009

Optimization of donor management goals yields increased organ use. – The American Surgeon, June 2010

Organ donor management and delayed graft function in kidney transplant recipients: A multicenter retrospective cohort studyAmerican Journal of Transplantation, January 2019

 

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