Recurrence / persistence / progression of disease for which the HCT or cellular therapy was performed.

If the disease is present at death, but not the underlying cause of death, “Recurrence/persistence/progression of disease for which the HCT or cellular therapy was performed” should be reported as a contributing cause of death. For example, if a recipient’s disease had been stable for months and the recipient died by accidental means, this option should be used as a contributing cause of death (not the primary cause of death).

Acute GVHD

If reported as a primary or contributing cause of death, acute GVHD should also be reported on the appropriate Post-HCT Data Form.

Chronic GVHD

If reported as a primary or contributing cause of death, chronic GVHD should also be reported on the appropriate Post-HCT Data Form.

Graft rejection or failure

The recipient had no hematopoietic recovery or had graft failure following initial hematopoietic recovery. If secondary graft failure is due to GVHD or infection, also report GVHD or infection as causes of death.

Cytokine release syndrom (CRS)

CRS occurs when there is a systemic inflammatory response as the result of immunotherapy (i.e. CAR T-cell therapy). In severe cases, it’s also known as “Cytokine storm.”

Infection

Report the etiology of the infection as Bacterial, Fungal, Viral, Protozoal, or Other infection, specify. If the organism was not identified, but evidence of infection was present based on clinical opinion, select “Infection organism not identified.” Also report infections in the “Infection” section on the 2100 form.

Do not report interstitial pneumonitis (IPn) using this cause of death code. IPn is collected in the “pulmonary” section.

Pulmonary

Idiopathic pneumonia syndrome (IPS) describes non-infectious lung injuries that occur early after HCT (within 100-120 days). Also report idiopathic pneumonia syndrome in the “Pulmonary Function” section on the 2100 form.

Interstitial pneumonitis (IPn) can result from infection by cytomegalovirus, adenovirus, respiratory syncytial virus, influenza, or Pneumocystis jirovecii (PCP). Interstitial pneumonitis resulting from cytomegalovirus should be reported using “pneumonitis due to cytomegalovirus.” Pneumonitis caused by other virii should be reported as “pneumonitis due to other virus.” Pneumonitis due to any other organism can be reported as “other pulmonary syndrome (excluding pulmonary hemorrhage)” and specifying IPn and the virus in question 5 or 7. Also report interstitial pneumonitis in the “Pulmonary Function” section on the appropriate Post-HCT Data Form.

Diffuse alveolar damage (without hemorrhage) describes histological changes found in lung disease. It’s associated with acute respiratory distress syndrome (ARDS) and transfusion related acute lung injury (TRALI).

Adult Respiratory Distress Syndrome (ARDS), also called acute respiratory distress syndrome, has acute onset, infiltrative respiratory distress. It is considered to be adult respiratory distress syndrome, rather than IPS/IPn. Also report adult respiratory distress syndrome in the “Pulmonary Function” section on the appropriate Post-HCT Data Form.

Organ failure (not due to GVHD or infection).

If the recipient died with organ failure (not due to GVHD or infection), it should be reported as a cause of death. If the organ system that has failed is not specified, but present at death based on clinical opinion, use “Other organ failure” and specify the organ involved in question 5 or 7.

Liver. If a cause of death was liver failure, except for veno-occlusive disease/sinusoidal obstruction syndrome (use VOD/SOS) or GVHD (use Acute GVHD or Chronic GVHD). Liver abnormalities should also be reported in the “Liver Function” sections of the appropriate Post-HCT Data Form.

Veno-occlusive disease (VOD) / sinusoidal obstruction syndrome (SOS). If a cause of death was VOD or SOS. Pulmonary veno-occlusive disease should be reported using this cause of death code. Do not report other types of liver failure using this cause of death code. Liver VOD/SOS should also be reported in the “Liver Function” sections of the appropriate Post-HCT Data Form.

Cardiac. If a cause of death was cardiac failure. Congestive heart failure and myocardial infarctions should also be reported on the appropriate Post-HCT Data Form.

Pulmonary. If a cause of death was pulmonary failure from non-infectious causes such as bronchiolitis obliterans (BO) or cryptogenic organizing pneumonia (COP). BO and COP should also be reported in the “Pulmonary Function” section of the appropriate Post-HCT Data Form.

Do not report pulmonary hemorrhage using this cause of death code (use “Pulmonary hemorrhage”).

Central nervous system (CNS). If a cause of death was due to central nervous system failure. CNS failure may include radiation-induced atrophy, brain stem dysfunction, or encephalitis of unknown origin.

Do not report death due to brain infection (e.g., meningitis) using this cause of death code (use “Infection”).

Do not report hemorrhagic stroke using this cause of death code (use “Intracranial hemorrhage”).

Renal. If a cause of death was due to renal failure. Renal failure that was severe enough to warrant dialysis (or the recommendation of dialysis) should also be reported on the appropriate Post-HCT Data Form.

Gastrointestinal (GI) (not liver). If the cause of death was due to gastrointestinal failure (such as intestinal obstruction or perforation).

Do not report gastrointestinal hemorrhage using this cause of death code (use “Gastrointestinal hemorrhage”).

Do not report liver failure using this cause of death code (use “Liver failure (not VOD)”).

Do not report graft-versus-host disease (GVHD) using this cause of death code (use “Acute GVHD” or “Chronic GVHD”).

Multiple organ failure, specify. If the cause of death is due to failure of more than one organ, please provide additional detail. Each failed organ system should be reported in the “specify” field (question 5 or 7).

If multiple organ failure was due to sepsis, report the infection as a cause of death. The infectious organism should be also reported in the “Infection” section of the 2100 form.

Other organ failure, specify. If a cause of death was not due to a specific organ or organ system listed above. Specify the organ or organ system involved.

Malignancy

The recipient died with evidence of a new malignancy post-HCT. If the recipient develops a new malignancy after transplant, it should also be reported in the “New Malignancy” section of the appropriate Post-HCT Data Form.

If there was a history of malignancy prior to transplant (i.e., not the primary disease for which the recipient was transplanted) and the recipient died with evidence of recurrence, persistence, or progression of the previous malignancy, it should be reported by selecting “Prior malignancy (malignancy initially diagnosed prior to HCT or cellular therapy, other than the malignancy for which the HCT or cellular therapy was performed).”

Hemorrhage.

If the recipient died with evidence of hemorrhage, use the cause of death options to report its location. If the hemorrhage was in an organ system that does not have a cause of death option, use “Other hemorrhage, specify.” and report the organ or location of the hemorrhage.

Pulmonary hemorrhages should also be reported in the “Pulmonary Function” sections on the appropriate Post-HCT Data Form.

Stroke should also be reported in the “Other Organ Impairment/Disorder” section on the appropriate Post-HCT Data Form.

Hemorrhagic cystitis should also be reported in the “Other Organ Impairment/Disorder” section on the appropriate Post-HCT Data Form.

Vascular

If the recipient died with evidence of vascular dysfunction, use the cause of death options to report the specific disorders. If the vascular disorder does not have a cause of death code, use “Other vascular, specify” and report the vascular abnormality.

Other

Accidental Death. The recipient’s death was caused by accidental or unintentional means.

Suicide. The recipient intentionally caused their own death.

In states where physician-assisted suicide is used to hasten death in terminally ill recipients, the cause of death should be reported as the underlying condition and suicide as a contributing cause of death.

Other cause, specify. If the recipient has a cause of death that is not captured using any of the above categories, please provide detailed information on the cause of death.

Last modified: Jan 31, 2017

Need more help with this?
Don’t hesitate to contact us here.

Was this helpful?

Yes No
You indicated this topic was not helpful to you ...
Could you please leave a comment telling us why? Thank you!
Thanks for your feedback.