Table.

RedCap Data Elements

Question
Does the patient have an epilepsy diagnosis?
Was SUDEP discussed at this visit?
Was the patient counselled on driving with epilepsy at this visit?
Was the patient screened for anxiety and/or depression at this visit?
Was the patient counselled regarding water safety at this visit?
Was the patient/caregiver counselled on epilepsy, and how its treatment may affect contraception and/or pregnancy?
For infantile spasms—what treatment was given as first line?
Did the patient have a normal physical examination?
If the patient's examination was abnormal, please list findings here:
When was the patient's last generalized tonic-clonic seizure?
Recently, what is the frequency of generalized tonic-clonic seizures?
In the past 12 mo, have any generalized tonic-clonic seizures occurred at night or from sleep?
When was the patient's last MOTOR seizure (not including GTCs)?
Recently, what is the frequency of MOTOR seizures (not including GTCs)?
When was the patient's last nonmotor seizure (for example, absence seizure or seizures with impaired awareness only)?
Recently, what is the frequency of nonmotor seizures?
When was the patient's last epileptic spasm (single spasm or cluster)?
Has the patient had status epilepticus requiring an emergency department visit in the past 12 mo?
Think of patient's usual routines, how often in the past 2 wk have seizures significantly changed it?
Think of patient's usual routine, how often in the past 2 wk have medication side effect changed it?
Epilepsy type: (best guess, taking into consideration history and diagnostic findings)
Is this child's epilepsy treatment resistant?
Is this child's epilepsy new onset? (i.e., the first unprovoked seizure was less than 6 mo ago)
What was the patient's age at first unprovoked seizure?
Current epilepsy syndrome:
Specific conditions associated with epilepsy:
Has the patient ever had epilepsy surgery? (including devices)
What kind of surgery? (can choose multiple)
Is the epilepsy etiology known?
Most recent brain imaging studies:
Please list any other imaging findings here:
Has genetic testing been conducted?
What is the genetic or chromosomal abnormality?
Is there a metabolic etiology?
Is there an infectious etiology?
Is there an autoimmune etiology?
What imaging studies have been performed?
Additional imaging study notes:
What were the results of the patient's EEG?
Does the patient have a developmental delay? (based on clinical impression/history)
Psychiatric/behavioral/cognitive Does the patient have any of the following comorbidities? (select all that apply)
Neurologic/heme Does the patient have any of the following comorbidities? (select all that apply)
Technology dependent Does the patient have any of the following comorbidities? (select all that apply)