CDEs
Forms
Was a liver MRI performed using a validated methodology per institutional preference (T2* or R2* or by ferriscan [R2 MRI]) for estimation of hepatic iron content?
Record date of liver MRI
Does the patient have significant clinical evidence of iron overload (estimated hepatic iron content >= 10mg Fe/g liver dry weight)?
Was a liver biopsy performed?
Record date of liver biopsy
Did the patient experience pulmonary hypertension during this assessment period?
Was this a new episode of pulmonary hypertension during this assessment period?
Did the gastroenterology/hepatology consultation and histological examination document the absence of cirrhosis, bridging fibrosis, and active hepatitis?
Does the patient have a first-degree related HLA-haploidentical donor who is willing and able to donate bone marrow?
Date of new episode of pulmonary hypertension
How was pulmonary hypertension diagnosed?
Date confirmatory typing completed
Was an intervention required to treat pulmonary hypertension?
Select treatment initiated
Other, specify
Does the patient have an HLA-matched sibling who is able and willing to donate bone marrow?
Did the patient experience a new onset of a significant cerebrovascular event (stroke, transient ischemic attack, or seizure) during this assessment period?
How many times did the patient experience a new onset of stroke during this assessment period?
How many times did the patient experience a new onset of transient ischemic attack (TIA) during this assessment period?
Has the patient experienced an uncontrolled bacterial, viral, or fungal infection in the 6 weeks before enrollment (currently taking medication with evidence of progression of clinical symptoms or radiologic findings)?
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