UNetsm, the transplant information database, contains transplant information that pertains to transplant candidates on the waiting list, donor/recipient matching, deceased and living donors, histocompatibility, and transplant recipients.
Much of the data are collected on data collection forms, while other data are derived from the computer Patient Waiting List, Feedback Records and Match Run programs.
Pre-Transplant Data
Waiting List The Patient Waiting List contains information used by the computer system to match potential organ recipients with available organ donors. Waiting list data can be entered online into the waiting list database by the UNOS Organ Center staff or by registered UNOS transplant professional members. Renal candidate data elements include name, gender, race, age, ABO blood group, number of previous transplants, peak and current panel reactive antibody (PRA) levels, acceptable donor characteristics, and patient human leukocyte antigens (HLAs). Information regarding non-renal candidates includes patient status codes (reflecting degree of medical urgency) for heart and liver, ABO blood group, patient age, gender, number of previous transplants, and acceptable donor characteristics. Each time a new patient is added to the waiting list, a Transplant Candidate Registration Form is generated for the member. When completed, this form adds additional clinical data about the potential transplant recipient.
Match Run Each time a deceased donor organ becomes available, a computer program compares donor information with transplant candidate characteristics stored on the waiting list. The computerized comparison process is known as a match run. For each donor organ, computerized matching algorithms are used to produce rank ordered lists of potential recipients. The matching algorithms used are based on organ allocation policies, transplant center acceptance criteria, and local variances (UNOS/OPTN-approved variations of UNOS/OPTN allocation policies).
Donors Organ Procurement Organizations (OPOs) submit donor information on Deceased Donor Registration and Living Donor Registration Forms. Deceased or deceased donor data include information about the donor OPO, donor demographics, consent for donation, organ recovery and preservation, donor serology, and intended organ recipients. Data pertinent to living donor transplants are sent in reports faxed to UNOS at the time of transplant. After the basic information provided in the report is entered at UNOS, appropriate data collection forms are generated. Living donor data collected include information regarding donor OPO, donor demographics, organ recovery, donor serology and certain data about the recipient.
Histocompatibility Histocompatibility laboratories submit data to UNOS 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 degree of haplotype match. Recipient data include transplant center information, recipient HLA typing, recipient PRA level, crossmatch data, and information about non-local donor HLA retyping.
Potential Recipients After each deceased donor organ is allocated, the donor OPO initiates completion of a Potential Recipient Form. Included on the form is a partial rank ordered listing of potential organ recipients indicated by the Match Run. For each individual on the list with higher priority than the actual recipient, a refusal code is entered indicating the reason the organ was not accepted for transplant.
Feedback Record Initial confirmation that a transplant has been performed occurs during the feedback process. The Feedback Record is an online electronic data file created after the Match Run. During the feedback process, the OPO or its representative enters information regarding the donor and the organs recovered for transplantation. For each organ, the recipient transplant center or its representative enters data pertaining to the actual organ recipient. Once these data are entered, UNOS uses them to generate forms for collection of additional data about the transplants. Data collection forms are generated for members as a result of the feedback process. Forms pertaining to donors are generated for OPOs, and forms pertaining to recipients are generated for transplant centers.
Transplant and Post-Transplant Data
Kidney Kidney data collected on the Transplant Recipient Registration Form include transplant date, patient status (at time of transplant), primary renal diagnosis, pre-transplant serology, organ preservation description, and surgical information. Additional data collected as part of the Transplant Recipient Follow-Up Form include patient status (at time of follow-up), information about organ rejection, immunosuppressive medication, graft status, cause of graft loss, patient status, and cause of death.
Liver Liver data collected at the time of recipient registration include transplant date, patient status (at time of transplant), recipient's primary liver disease, pre-transplant serology, organ preservation information, and pre-transplant lab work pertaining to liver function. Follow-up data include patient status, cause of death, patient description (at time of follow-up), most recent lab information, information about organ rejection, immunosuppressive medication, graft status, and cause of graft failure.
Pancreas Pancreas transplant registration information includes transplant date, information about the patient's diabetes, patient pre-transplant status, pre-transplant lab data, pre-transplant serology, organ preservation data, and information about the surgical procedure. Follow-up data include post-transplant patient status, most recent lab data, information about organ rejection, complications related to the pancreas transplant, information about the kidney transplant (whether a kidney transplant accompanied or preceded the pancreas transplant), immunosuppressive medication, data regarding graft status, cause of graft failure, and status of patient's diabetes.
Thoracic (Heart, Lung, and Heart/Lung) Data collected at the time of recipient registration include transplant center information, recipient demographics, organ type transplanted (heart, lung, or heart-lung combination), patient description, pre-transplant serology, and factors that increase the patient's risk for a poor transplant outcome.
These forms are provided for information purposes only to show what data elements are currently collected. Transplant centers and organ procurement organizations enter data into the OPTN database via the Internet using the secure Web-based application UNetsm.
- Transplant Candidate Registration Form includes waiting list data as well as other clinical and organ-specific information collected prior to the transplant. There is a separate adult and pediatric form for each organ type:
Adult:
Kidney/Pancreas,
Kidney,
Pancreas,
Liver,
Intestine,
Heart,
Lung, and
Heart/Lung.
Pediatric:
Kidney/Pancreas,
Kidney,
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 waiting list. There is a separate adult and pediatric form for each organ type:
Adult:
Kidney/Pancreas,
Kidney,
Pancreas,
Liver,
Intestine,
Thoracic-Lung,
Thoracic-Heart, and
Thoracic-Heart-Lung.
Pediatric:
Kidney/Pancreas,
Kidney,
Pancreas,
Liver,
Intestine,
Thoracic-Lung,
Thoracic-Heart, and
Thoracic-Heart/Lung.
- Transplant Recipient Follow-up Form is generated six months post-transplant (excluding thoracic) and on the transplant anniversary for every living organ recipient with a functioning graft. It includes patient status, clinical and treatment information. There is a separate adult and pediatric form for each organ type:
Adult:
Kidney/Pancreas,
Kidney,
Pancreas,
Liver,
Intestine, and
Thoracic-Heart/Lung.
Pediatric:
Kidney/Pancreas,
Kidney,
Pancreas,
Liver,
Intestine, and
Thoracic-Heart/Lung.
- Adultor Pediatric Post Transplant Malignancy Form is generated after a malignancy has been reported on the Transplant Recipient Follow-up.
- 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 but not recovered donors and recovered donors.
- Living Donor Registration Form collects data for all living organ donors.
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Living Donor Follow-up Form includes patient status and clinical information collected at intervals of six months, and one year post-transplant
- Donor Histocompatibility Form collects tissue typing data for deceased and living donors.
These forms are provided for information purposes only to show what data elements are currently collected. Members should contact the Membership Services Department to discuss the submission of any of these forms in order to ensure that the appropriate documents are being completed. Editable (Word) versions of the forms may also be obtained from the Membership Services Department.
Refer to the bylaws for further clarification regarding requirement specifics.
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| UNetsm enables transplant centers, organ procurement organizations and histocompatibility laboratories to: |
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manage their list of waiting transplant candidates |
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access and complete electronic versions of Data Collection Forms |
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add donor information and run donor-recipient matching lists |
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access various transplant data reports and policies |
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