See ISHLT Registration Data Elements for technical details for the registration fields.
Click here to view a sample of the 5-page Registration Record.
Note: All of the fields on the Discharge page are optional.
Graft Status: If the graft is functioning, select Functioning. If the graft is not functioning at the time of hospital discharge or time of report, select Failed. If Failed, complete the remainder of this section.
Note: If death is indicated for the recipient, and the death was a result of some other factor unrelated to graft failure, select Functioning.
If Failed, provide the following information:
Primary Cause of Graft Failure: Select the cause of graft failure.
Any Drug Treated Infection: Select YES if the patient received any antibiotic medication for treatment of a documented post-operative infection during this hospitalization. If not, select NO. If unknown, select UNK.
Stroke: Select YES if the patient experienced a stroke (CVA) following the transplant. If not, select NO. If unknown, select UNK.
Dialysis: Select YES if the patient needed to have peritoneal or hemodialysis following the transplant. If not, select NO. If unknown, select UNK.
Cardiac Re-Operation: Select YES if the patient had any cardiac surgery following the transplant operation. If not, select NO. If unknown, select UNK.
Time on inotropes other than Isoproterenol (Isuprel) (HEART, HEART/LUNG ONLY): Indicate the number of days the patient was on inotropes other than Isoproterenol (Isuprel) in the space provided.
Ventilator support (LUNG, HEART/LUNG ONLY): Indicate whether the patient received ventilator support from the provided list. If the patient received ventilator support, indicate the duration of the their ventilator support. If the duration is unknown, select Ventilator support, duration unknown. If the patient did not receive ventilator support, select NO. If this information is unknown, select Unknown Status.
Reintubated (LUNG, HEART/LUNG ONLY): Select YES if the patient was reintubated. If not, select NO. If unknown, select UNK.
Permanent Pacemaker: Select YES if the patient needed a permanent pacemaker implantation during the initial hospitalization following the transplant operation. If not, select NO. If unknown, select UNK.
Chest drain > 2 weeks: Select YES if the patient received a chest drain for more than two weeks during the initial hospitalization following the transplant operation. If not, select NO. If unknown, select UNK.
Airway Dehiscence: Select YES if the patient developed an airway dehiscence during the initial hospitalization following the transplant operation. If not, select NO. If unknown, select UNK.
Did patient have any acute rejection episodes between transplant and discharge: If the patient had any acute rejection episodes between transplant and discharge, select YES. If not, select NO. If Yes is selected, indicate if at least one episode was treated with an anti-rejection agent or if none were treated with additional anti-rejection agent.
Biological or Anti-viral Therapy: Select YES, NO or Unknown/Cannot Disclose if biological or anti-viral therapy is being administered to the patient. If YES is selected, check all that apply:
HBIG (Hepatitis B Immune Globulin)
Flu Vaccine (Influenza Virus)
Lamivudine (Epivir) (for treatment of Hepatitis B)
Other, Specify (Specify in the spaces provided)
Other Therapies: Select YES or No to indicate if the patient received other therapies. If YES is selected, check all that apply:
Total Lymphoid Irradiation (TLI)
Are any medications given currently for maintenance or anti-rejection: Select YES to indicate medications have been given to the patient for maintenance or anti-rejection during the time between transplant and hospital discharge, or 6 weeks post-transplant if the patient has not been discharged. If not, select NO. If YES, select the Immunosuppressive Medications.
Did the patient participate in any clinical research protocol for immunosuppressive medications: Select YES to indicate the patient did participate in clinical research for immunosuppressive medications. If not, select NO. If YES, select NO. If YES, specify in the space provided.
IMMUNOSUPPRESSIVE MEDICATIONS AT TRANSPLANT
For each of the immunosuppressive medications listed, select Ind. (Induction), Maint (Maintenance) or AR (Anti-rejection) to indicate all medications that were prescribed for the patient during the initial transplant hospitalization period, and for what reason. If a medication was not given, leave the associated box blank.
Induction (Ind.) immunosuppression includes all medications given for a short finite period in the perioperative period for the purpose of preventing acute rejection. Though the drugs may be continued after discharge for the first 30 days after transplant, it will not be used long-term for immunosuppressive maintenance. Induction agents are usually polyclonal, monoclonal, or IL-2 receptor antibodies (example: Methylprednisolone, Atgam, Thymoglobulin, OKT3, Simulect, or Zenapax). Some of these drugs might be used for another finite period for rejection therapy and would be recorded as rejection therapy if used for this reason. For each induction medication indicated, enter the total number of days the drug was actually administered in the space provided. For example, if Simulect or Zenapax was given in 2 doses a week apart then the total number of days would be 2, even if the second dose was given after the patient was discharged.
Maintenance (Maint) includes all immunosuppressive medications given before, during or after transplant with the intention to maintain them long-term (example: Prednisone, Cyclosporine, Tacrolimus, Mycophenolate Mofetil, Azathioprine, or Rapamycin). This does not include any immunosuppressive medications given to treat rejection episodes, or for induction.
Anti-rejection (AR) immunosuppression includes all immunosuppressive medications given for the purpose of treating an acute rejection episode during the initial post-transplant period or during a specific follow-up period, usually up to 30 days after the diagnosis of acute rejection (example: Methylprednisolone, Atgam, OKT3, or Thymoglobulin). When switching maintenance drugs (example: from Tacrolimus to Cyclosporine; or from Mycophenolate Mofetil to Azathioprine) because of rejection, the drugs should not be listed under AR immunosuppression, but should be listed under maintenance immunosuppression.
Note: As further clarification, drugs that are used with the intention to maintain patients long-term are medications such as Tacrolimus, Cyclosporine, Azathioprine, Mycophenolate Mofetil and Prednisone. These maintenance medications should not be listed as AR medications to treat acute rejection. When patients have a true acute rejection, they are given anti-rejection medication such as steroids, OKT3, ATG, Simulect and Zenapax, in addition to the maintenance medications. These are the medications that should be selected as anti-rejection.
If an immunosuppressive medication other than those listed is being administered (e.g., new monoclonal antibodies), select Ind., Maint, or AR next to Other Immunosuppressive Medication field, and enter the full name of the medication in the space provided. Do not list non-immunosuppressive medications.
If the number of days is unavailable for an induction medication, select the appropriate status from the ST field.