The date of actual contact with the recipient to determine medical status for this follow-up report is based on a medical evaluation conducted by a clinician with responsibility for the recipient’s care. Report the date of the medical evaluation performed closest to the designated time period of the form (e.g., Day+100, 6 months, or annual follow-up visit). Time windows are provided to guide selection of dates for reporting purposes. Recipients are not always seen within the time windows used for reporting follow-up dates, and some discretion is therefore required when determining which date to report. If the recipient is not seen within the time windows, report the date closest to the date of contact within reason.

If the Post-TED Form reports a subsequent transplant, report the date of latest follow-up as the day prior to the start of the preparative regimen. If no preparative regimen or conditioning was given, report the day prior to infusion as the date of contact.

Question 1: Date of actual contact with the recipient to determine medical status for this follow-up report

Enter the date of actual contact with recipient to determine medical status for this follow-up report. Acceptable evaluations include those from the transplant center, referring physician, or other physician currently assuming responsibility for the recipient’s care. Please capture a physician evaluation that falls within the appropriate range, if possible, rather than other types of patient contact that may be closer to the actual time point. If an evaluation was not performed at Day+100, at 6 months, or on the HCT anniversary, choose the date of the visit closest to the actual time point.

If the recipient has not been seen by a clinician during the reporting period but the survival status is known, complete the Survival Tool referenced in the CIBMTR Data Management Guide, found here.

In general, the date of contact should be reported as close to the 100 day, 6 month, or annual anniversary to transplant as possible. Report the date of actual contact with the recipient to evaluate medical status for the reporting period. In the absence of contact with a clinician, other types of contact may include a documented phone call with the recipient, a laboratory evaluation, or any other documented recipient interaction on the date reported. If there was no contact on the exact time point, choose the date of contact closest to the actual time point. Below, the guidelines show an ideal approximate range for reporting each post-transplant time point:

Time Point Approximate Range
100 days +/- 15 days (Day 85-115)
6 months +/- 30 days (Day 150-210)
1 year + 60 days (Day 365 – 425)
Annual reporting 2+ years +/- 30 days (Months 23-25, 35-37, etc)

Recipients are not always seen within the approximate ranges and some discretion is required when determining the date of contact to report. In that case, report the date closest to the date of contact within reason. The examples below assume that efforts were undertaken to retrieve outside medical records from the primary care provider, but no documentation was received.

Example 1. The 100 day date of contact doesn’t fall within the ideal approximate range.
The autologous recipient was transplanted on 1/1/13 and is seen regularly until 3/1/13. After that, the recipient was referred home and not seen again until 7/1/13 for a restaging exam and 7/5/13 for a meeting to discuss the results.

What to report:
100 Day Date of Contact: 3/1/13 (Since there was no contact closer to the ideal date of 4/11/13, this date is acceptable)
6 Month Date of Contact: 7/5/13 (note the latest disease assessment would likely be reported as 7/1/13)

Example 2. The 100 day date of contact doesn’t fall within the ideal approximate range and the recipient wasn’t seen again until 1 year post-HCT.
The autologous recipient was transplanted on 1/1/12 and is seen regularly until 3/1/12. After that, the recipient was referred home and not seen again until 1/1/13 for a restaging exam and 1/4/13 for a meeting to discuss the results.

What to report:
100 Day Date of Contact: 3/1/13 (Since there was no contact closer to the ideal date of 4/11/13, this date is acceptable)
6 Month Form: Indicate the recipient is lost to follow-up in FormsNet3
1 Year Date of Contact: 1/4/13 (note the latest disease assessment would likely be reported as 1/1/13)

Additional Information

  • A date of contact should never be used multiple times for the same recipient’s forms.
    • For example, 6/1/13 should not be reported for both the 6 month and 1 year form. Instead, determine the best possible date of contact for each reporting period; if there is not a suitable date of contact for a reporting period, this may indicate that the recipient was lost to follow-up.
  • If the recipient has a disease evaluation just after the ideal date of contact, capturing that data on the form may be beneficial.
    • For example, if the recipient’s 90 day restaging exam was delayed until day 115 and the physician had contact with the recipient on day 117, the restaging exams can be reported as the latest disease assessment and day 117 would be the ideal date of contact, even though it is just slightly after the ideal approximate range for the date of contact.

Date of Contact & Death
In the case of recipient death, the date of death should be reported as the date of contact regardless of the time until the ideal date of contact. The date of death should be reported no matter where the death took place (inpatient at the transplant facility, at an outside hospital, in a hospice setting, or within the recipient’s home).

If the death occurred at an outside location and records of death are not available, the dictated date of death within a physician note may be reported. If the progress notes detailing the circumstances of death are available, request these records. These records are useful for completing required follow-up data fields and the cause of death data fields on this form. If the exact date of death is not known, use the processed described for reporting partial or unknown dates, see General Instructions, General Guidelines for Completing Forms.

Example 3. The recipient has died before their six month anniversary.
The recipient is transplanted on 1/1/13, was seen regularly through the first 100 days. They had restaging exams on 4/4/13 and was seen on 4/8/13, and then died on 5/13/13 in the hospital emergency room.

What to report:
100 Day Date of Contact: 4/8/13 (note the latest disease assessment would likely be reported as 4/4/13)
6 Month Date of Contact: 5/13/13 (though the death does not occur within the ideal approximate range for 6 months)

Example 4. The recipient has died after their six month anniversary.
The recipient is transplanted on 1/1/13, was seen regularly through the first 100 days. They had restaging exams on 4/22/13 and was seen on 4/23/13. Based on findings in the restaging exam, the recipient was admitted for additional treatment. The disease was found to be refractory on a 6/25/13 restaging exam, and the recipient was discharged to hospice on 7/8/13. The hospital was notified via telephone that the recipient died on 7/16/13.

What to report:
100 Day Date of Contact: 4/23/13 (note the latest disease assessment would likely be reported as 4/22/13)
6 Month Date of Contact: 7/16/13 (note the latest disease assessment would likely be reported as 6/25/13)

Date of Contact & Subsequent Transplant
If the recipient has a subsequent HCT, report the date of contact as the day before the preparative regimen begins for the subsequent HCT. If no preparative regimen is given, report the date of contact as the day before the subsequent HCT. In these cases, actual contact on that day is not required, and the day prior to the initiation of the preparative regimen (or infusion, if no preparative regimen) should be reported. This allows every day to be covered by a reporting period but prevents overlap between transplant events.

Example 5. The recipient had a 2nd transplant with a preparative regimen.
The recipient has their first transplant on 1/1/13 and a planned second transplant on 2/1/13. The recipient was admitted on and received their first dose of chemotherapy for the preparative regimen for HCT #2 on 1/28/13.

What to report:
100 Day Date of Contact: 1/27/13 (regardless of actual contact on that date)

Example 6. The recipient had a subsequent transplant without a preparative regimen.
Following their first transplant on 1/1/13, a recipient with SCID required a subsequent allogeneic transplant due to poor graft function. The recipient has remained inpatient following the first transplant. The physician planned the second transplant for 5/31/13, and proceeded without a preparative regimen.

What to report:
100 Day Date of Contact: 4/11/13 (+/- 15 days)
6 Month Date of Contact: 5/30/13

1-Year Date of Contact
When reporting the date of contact for the 1-year reporting period, if the recipient is alive, report a contact date on or after Day 365. The date of contact should not be reported prior to Day 365 for the 1-year reporting period. This ensures the recipient is included in the numerator for the transplant center’s Center Specific Analysis (CSA).

Example 7. A recipient is evaluated before and after Day 365 but not on Day 365
The recipient had an allogeneic transplant on 1/5/13 and is seen regularly until 6/20/13. After that, the recipient was referred home and not seen again until 1/1/14 for a restaging exam and again on 1/15/14 to review the results. Day 365 is 1/5/14.

What to report:
1-Year Date of Contact: 1/15/14 (since this date is ≥ Day 365)

Example 8. A recipient is evaluated before and after Day 365 but not on Day 365
The recipient is transplanted on 2/28/19 and seen regularly until 8/28/19. The next visit is on 2/20/20 for blood work and the lab results are phoned to the recipient on 2/21/20. The recipient was not evaluated again until 4/1/20. Day 365 is 2/28/20.

What to report:
1-Year Date of Contact: 4/1/20

For more information regarding reporting partial or unknown dates, see General Instructions, General Guidelines for Completing Forms.

Question 2: Specify the recipient’s survival status at the date of last contact:

Indicate the clinical status of the recipient on the date of actual contact for follow-up evaluation. If the recipient is alive continue with question 7. If the recipient has died, continue with question 3.

Question 3: Primary cause of death:

Report the underlying cause of death. Do not report the mode of death, such as cardiopulmonary arrest. According to the Centers for Disease Control and Prevention, National Center for Health Statistics, the underlying cause of death is “the disease or injury that initiated the chain of events that led directly or inevitably to death.”

Report only one primary cause of death; see the Cause of Death Codes section of the Forms Instructions Manual for more details regarding cause of death. If the recipient has recurrent/persistent/progressive disease at the time of death, consider if the disease was the primary cause of death or a contributing cause of death. It should not be assumed that the presence of disease indicates that the disease was the primary cause of death.

If the primary cause of death is unclear, consult with a physician for their best medical opinion.

Question 4: Specify

Specify the details for primary cause of death requiring “other” specification. Options which require additional specification include “Other infection”, “Other pulmonary syndrome”, “Multiple organ failure”, “Other organ failure”, “Other hemorrhage”, “Other vascular”, and “Other cause”. Information reported in the specify field must pertain to the option selected (e.g., an infectious cause of death should be specified for “Other infection”).

Question 5: Contributing cause of death:

Report any additional causes of death. All contributing causes of death are important for analysis of transplant outcomes. Refer to the Cause of Death Codes section of the Forms Instructions Manual for more details regarding cause of death.

If there were multiple contributing causes of death, enable an additional instance to report additional causes.

Question 6: Specify

Specify the details for contributing cause of death requiring “other” specification. Options which require additional specification include “Other infection”, “Other pulmonary syndrome”, “Multiple organ failure”, “Other organ failure”, “Other hemorrhage”, “Other vascular”, and “Other cause”. Information reported in the specify field must pertain to the option selected (e.g., an infectious cause of death should be specified for “Other infection”).

Last modified: Sep 30, 2020

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