Question 68: Has a central nervous system (CNS) event occurred?
A CNS event is the development of different neurologic signs and symptoms that occur in recipients with sickle cell disease. See question 69 for a list of CNS events.
Report Yes if the recipient experienced a CNS event at any time between diagnosis and the start of the preparative regimen / infusion. If a CNS event did not occur or no information is available to determine if a CNS event occurred, report No or Unknown, respectively and go to question 77.
Question 69: Specify type of CNS event
Indicate the type of CNS event that occurred. If multiple events occurred, report each event as a separate instance, even if it is the same event experienced at different times.
- Cerebral venous thrombosis: A blood clot in the cerebral vein in the brain.
- Hemorrhagic stroke: Blood vessels break and bleeds in the brain.
- Ischemic stroke: The most common type of stroke. Occurs when a blood vessel in the brain is blocked or narrowed, causing reduced blood flow.
- Moyamoya: A rare condition where the carotid artery is blocked or narrowed which reduces the blood flow to the brain.
- Overt stroke: A focal neurological deficit lasting more than 24 hours. If the type of CNS event is not documented and only noted as a “stroke,” select this option.
- Seizure: Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minors physical sings, thought disturbances or a combination of symptoms.
- Silent stroke: Asymptomatic stroke.
- Transient ischemic stroke: A temporary period of mild stroke symptoms that lasts only a few minutes and does not result in permanent damage. This is also known as transient ischemic attack or a ministroke.
Questions 70 – 71: Year of onset
Indicate if the year of onset of the CNS event reported is Known or Unknown. If Known, report the year of onset in question 71. If the year of onset is not known, select Unknown.
Questions 72 – 73: Was an MRI / MRA of the brain performed for the diagnosis of this reported CNS event?
Magnetic resonance imaging (MRI) is an imaging technique used to form pictures of the anatomy and the physiological processes of the body. Magnetic resonance angiography (MRA) is similar to MRI but is used to specifically examine blood vessels.
Indicate if an MRI or MRA was performed to diagnose the reported CNS event. If Yes, indicate if a copy of the diagnostic MRI / MRA report is attached. Only attach the MRI / MRA report performed “at diagnosis” of the CNS event – do not attach an MRI / MRA report performed at any other time-point. The diagnostic MRI / MRA report may not be the most recent scan performed prior to the start of the preparative regimen.
For instructions on how to attach documents in FormsNet3 SM, refer to the Training Guide.
If an MRI / MRA was not performed to diagnose the reported CNS event or if no information is available to determine if an MRI / MRA was performed at diagnosis of the CNS event, report No or Unknown, respectively.
Questions 74 – 76: Was transcranial doppler velocity assessed for this reported CNS event?
Transcranial doppler and transcranial color doppler are types of ultrasonography that measure the velocity of blood flow through the brain’s blood vessels by measuring the echoes of ultrasound waves moving trans-cranially.
Indicate if transcranial doppler velocity was assessed at the time of diagnosis for the reported CNS event. If Yes, report the date of the assessment and the transcranial doppler velocity value in cm / sec. If transcranial doppler velocity was not assessed or if no information is available to determine if transcranial doppler velocity was assessed at the time of diagnosis for the reported CNS event, report No or Unknown, respectively and go to question 77.
Section Updates:
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