UNOS DonateLife

UNet^SM, the electronic transplant information application, enables the OPTN to collect data entered by transplant professionals on transplant candidates, deceased and living donors, and transplant recipients. OPTN members that enter these data include transplant centers, histocompatibility laboratories, and organ procurement organizations.

Pre-transplant information is derived primarily from the waitlist and match runs. Transplant professionals enter some pre-transplant information about both candidates and recipients and post-transplant information about recipients on organ-specific OPTN data collection forms. Information used to reconcile donor and recipient data about the transplant is entered on the Donor Organ Disposition record.

Pre-Transplant Data

• Waiting List >
  The computer system uses information from the waitlist to match potential organ recipients with available organ donors. OPTN member transplant centers, histocompatibility laboratories, and in some cases, the UNOS Organ Center staff enter the data for the waitlist online. These data include candidate name, gender, ethnicity, ABO, date of birth, number of previous transplants, and acceptable donor characteristics. Additional data for kidney candidates includes calculated PRA (a measure of sensitization), and candidate human leukocyte antigens (HLA). PRA and HLA data help transplant professionals predict how a transplant candidate's immune system will respond to a specific transplanted organ. Medical urgency status and/or clinical laboratory data specific to a particular organ are entered for heart, liver, lung and intestine candidates. Whenever a transplant center adds a candidate to the waitlist, UNet generates a Transplant Candidate Registration Form (TCR) to collect additional clinical data about the transplant candidate.
• Match Run >
  For each donor organ, the use of computerized matching algorithms produces rank ordered lists of potential recipients by comparing donor information with transplant candidate characteristics. This rank ordered list of potential recipients is known as the match run. The matching algorithms are based on OPTN organ allocation policies, transplant center acceptance criteria, and local variances (OPTN-approved variations of national allocation policies).
• Donors >
  Organ Procurement Organizations (OPOs) submit donor information on the Deceased Donor Registration Form. Deceased donor data include information about the donor OPO, donor demographics, consent for donation, organ recovery and preservation, donor serology, and actual organ recipients. A transplant center uses UNet to submit any information related to living donor transplants. After OPO staff enter the basic donor information, UNet generates an appropriate data collection form. Living donor data collected include the donor workup facility, donor recovery facility, donor demographics, organ recovery, donor serology, and organ-specific clinical and surgical information.
• Histocompatibility >
  Histocompatibility laboratories submit data on the Donor Histocompatibility Form and the Transplant Recipient Histocompatibility Form. Donor data include OPO information and donor HLA typing. If the donor is living, information is provided regarding the degree of haplotype match. Recipient data include transplant center information, recipient HLA typing, recipient PRA level, crossmatch data, and information about donor HLA retyping.
• Potential Recipients >
  After each deceased donor organ is allocated, the donor OPO and transplant centers that receive organ offers are required to enter additional information on the match run. For each individual on the match run with higher priority than the actual recipient, OPOs or transplant centers must enter a refusal code indicating why the organ was not accepted for transplant.
• Feedback Record >
  Initial confirmation that a deceased donor transplant has been performed occurs during the feedback process. Donor Organ Disposition and Recipient Feedback are electronic data files that show the final disposition for organs. During the feedback process, the OPO enters information regarding the donor and the organs recovered for transplantation. For each transplanted organ, the recipient transplant center enters data pertaining to the actual organ recipient. Once these data are entered and reconciled, UNetsm generates the appropriate data collection forms for members. . Forms pertaining to deceased donors are generated for OPOs, and forms pertaining to recipients and living donors are generated for transplant centers.

Transplant and Post-Transplant Data

Much of the data collected on the Transplant Recipient Registration (TRR) form are similar across organ types. There are separate adult and pediatric forms for each organ. Elements common to most forms include primary diagnosis, medical condition at time of transplant, functional status, pre-transplant serology, and transplant procedure type. Pre-transplant risk factors vary by form, such as dialysis status for kidney transplants, portal vein thrombosis and previous abdominal surgery for liver transplants, and hemodynamic data for thoracic transplants. See the individual data collection forms for more information.

Elements common to the Transplant Recipient Follow-up (TRF) forms include patient status and cause of death, graft status and cause of graft failure, rejection episodes, and biological/anti-viral and immunosuppressive medications. A measure of renal function post-transplant is collected for all organs. Other information collected varies by organ type. Beyond 5 years post-transplant, a reduced set of follow-up data are collected. For more details, see the individual data collection follow-up forms.

OPTN Data Collection Forms

These forms show what data elements the OPTN currently collects. Transplant centers, histocompatibility laboratories, and organ procurement organizations enter data into the OPTN database via using the secure Web-based application, UNet.

• Transplant Candidate Registration Form includes waitlist data as well as other clinical and organ-specific information collected prior to the transplant.
  Adult: Kidney, Kidney/Pancreas, Pancreas, Liver, Intestine, Heart, Lung, and Heart/Lung.
  Pediatric: Kidney, Kidney/Pancreas, Pancreas, Liver, Intestine, Heart, Lung, and Heart/Lung.
• Transplant Recipient Registration Form includes the patient status at discharge, pre- and post-transplant clinical information, as well as treatment data. The form is generated when the patient receives a transplant and is removed from the waitlist.
  Adult: Kidney, Kidney/Pancreas, Pancreas, Liver, Intestine, Thoracic-Lung, Thoracic-Heart, and Thoracic-Heart/Lung.
  Pediatric: Kidney, Kidney/Pancreas, Pancreas, Liver, Intestine, Thoracic-Lung, Thoracic-Heart, and Thoracic-Heart/Lung.
• Transplant Recipient Follow-up Form is generated at six months post-transplant and on the transplant anniversary for every living organ recipient with a functioning graft. It includes patient status as well as clinical and treatment information. A reduced set of data is collected after 5 years. Shown here are the adult and pediatric forms for collecting follow-up through 5 years post-transplant.
  Adult: Kidney, Kidney/Pancreas, Pancreas, Liver, Intestine, Thoracic-Lung, Thoracic-Heart, and Thoracic-Heart/Lung.
  Pediatric: Kidney, Kidney/Pancreas, Pancreas, Liver, Intestine, Thoracic-Lung, Thoracic-Heart, and Thoracic-Heart/Lung.
• Adult or Pediatric Post Transplant Malignancy Form is generated after a malignancy has been reported on the Transplant Recipient Follow-up.
• Liver Recipient Explant Pathology Form includes data related to the pathology of the explanted liver. The form is generated only when the patient's MELD/PELD score at the time of transplant was based on exception points for hepatocellular carcinoma (HCC) and not the calculated MELD/PELD score.
  
• Recipient Histocompatibility Form collects tissue typing and crossmatch information for the recipient post-transplant.
• Deceased Donor Registration Form is to be completed for all consented donors.
• Living Donor Registration Form collects data on all living organ donors.
• Living Donor Follow-up Form includes patient status and clinical information collected at intervals of six months, one year, and two years post-donation.
• Donor Histocompatibility Form collects tissue typing data for deceased and living donors.