Question 1: Date of diagnosis of primary disease for HCT / cellular therapy
Report the date of the first pathological diagnosis (e.g., bone marrow or tissue biopsy) of the disease or the date of genetic testing. Enter the date the sample was collected for examination. If the diagnosis was determined at an outside center, and no documentation of a pathological or laboratory assessment is available, the dictated date of diagnosis within a physician note may be reported. Do not report the date symptoms first appeared.
If diagnosed in utero, report the date of birth as the diagnosis date.
For any congenital diseases, the date of birth should be reported as the diagnosis date.
If the exact diagnosis date is not known, use the process described in General Instructions, Guidelines for Completing Forms.
Questions 512 – 513: Specify inherited abnormalities of metabolism classification:
Indicate the inherited abnormalities of metabolism disease classification at diagnosis. If the subtype is not listed, report as Other inherited metabolic disorder* and specify the reported disease. If a certain disease becomes a common indication for HCT, the CIBMTR will add the disease as a separate category.
Question 514: Report the Loes composite score (Adrenoleukodystrophy (ALD) only):
The Loes composite score is often used to assess disease/progression for recipients with ALD. The Loes composite score is a rating from 0-34, this signifies the severity of abnormalities detected in the brain after evaluation of MRI. Report the Loes composite score. if the score is unknown, check with a transplant physician to determine this value.
Section Updates:
| Question Number | Date of Change | Add/Remove/Modify | Description | Reasoning (If applicable) |
|---|---|---|---|---|
| . | . | . | . | . |
Need more help with this?
Don’t hesitate to contact us here.