CDEs
Forms
Record the date of the repeat cerebral MRI/MRA with evidence of stabilization of the cerebral infarct
Specify why neurological event information was not available
Specify why focal neurological event information was not available
Does the patient have a history of two or more episodes of acute chest syndrome (ACS) in the two-year period preceding enrollment despite the institution of supportive care measures (i.e. asthma therapy and/or hydroxyurea)?
Date of ACS episodes
Specify why ACS information was not available
Does the patient have a history of three or more severe vaso-occlusive pain crises per year in the two-year period preceding enrollment despite the institution of supportive care measures (i.e. a pain management plan and/or treatment with hydroxyurea); painful episodes related to priapism, osteonecrosis or any sickle-related complication?
Start date of severe pain crisis 2 years prior to enrollment
Start date of severe pain crisis 1 year prior to enrollment
Specify why pain crises information was not available
Has the patient received >= 8 packed red blood cell (RBC) transfusions per year for >= 1 year in the 12 months before enrollment to prevent vaso-occlusive clinical complications (i.e. pain, stroke, and acute chest syndrome)?
Start date of RBC transfusion
Specify why RBC transfusion therapy information was not available
Does the patient have an echocardiographic finding of tricuspid valve regurgitant jet velocity (TRJV) >= 2.7m/sec?
Record tricuspid valve regurgitant jet velocity (TRJV)
Does the patient have Hemoglobin SS disease (HbSS) or Hemoglobin Sβ° (HbSβ°) Thalassemia?
Record the type of SCD
Performance status scale used to evaluate patient (Lansky for patients < 16 years old; Karnofsky for patients >= 16)
Record patient's performance status
Record the type of cardiac fraction test performed
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