Q614 – 619: Histiocytic Disorders

Question 1: Date of diagnosis of primary disease for infusion

Use the following guidelines if the recipient was diagnosed with a non-malignant disease:

• Newborn screening: If the diagnosis was made using a newborn screening, report the date of birth as the diagnosis date.
• Genetic testing: If the recipient was not diagnosed with a newborn screening, report the date of genetic testing that confirmed the diagnosis.
• Other Definitive Assessment: If genetic testing was not completed, report the date of the other definitive assessment (i.e., electrophoresis, flow cytometry, etc.), that confirmed the diagnosis.
• Diagnosis by exclusion: If the diagnosis was made by exclusion (i.e., all assessments returned normal and the diagnosis made clinically), report the date of the clinical diagnosis as documented by the physician.
• Diagnosis at an outside center: If the diagnosis was completed at an outside center (the confirmatory test such as genetic testing, another definitive test, or clinical diagnosis) and the HCT / CT center performs their own confirmatory testing, report the date of the initial confirmatory test as the diagnosis date.
  • If the exact date is not known or documentation is limited, report an estimated date.

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 the exact diagnosis date is not known, use the process described in General Instructions, Guidelines for Completing Forms.

Questions 614 – 616: Specify the histiocytic disorder classification

CIBMTR captures the classification of histiocytic disorders based on the International Union of Immunological Societies (IUIS) 2022. Indicate the histiocytic disorder disease classification at diagnosis. If the subtype is not listed, report as Other pigmentary dilution disorder or Other histiocytic disorder and specify the reported disease.

If a certain disease becomes a common indication for infusion, the CIBMTR will add the disease as a separate category.

Questions 617 – 618: Did the recipient have an active or recent infection with a viral pathogen within 60 days of infusion?

Viral infections are caused by exposure to a new virus or reactivation of a dormant virus already present in the body. The most common viral infections are due to HSV (Herpes Simplex Virus), and CMV (Cytomegalovirus). Report Yes if the recipient had an active or recent infection with a viral pathogen within 60 days of infusion and specify the viral pathogen causing the infection. Check all that apply.

If the recipient did not have an active or recent infection with a viral pathogen or it is unknown, report No.

Question 619: Has the recipient ever been infected with PCP/PJP

PCP Pneumocystis is a common fungal infection commonly affecting the lungs. Indicate if the recipient has ever been infected with PCP/PJP.

Section Updates:

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