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CDE Detailed Report
This report contains detailed information about the selected CDEs.
Note: If at least one CDE was selected from a copyright- or trademark-protected instrument/scale then all of the CDEs from that instrument/scale are included in this report.
Disease: Epilepsy
Sub-Domain: Classification
CRF: Syndromes by Age of Onset
Item count: 18 (18 distinct CDEs)
CDE ID
CDE Name
Variable Name
Definition / Description
Question Text
Permissible Value
Description
Data Type
Instructions
References
Population
Classification (e.g., Core)
Version #
Version Date
Aliases for Variable Name
CRF Module / Guideline
© or TM
Sub-Domain
Domain
Previous Title
Size
Input Restrictions
Min Value
Max Value
Measurement Type
LOINC ID
SNOMED
caDSR ID
CDISC ID
C18950
Epilepsy syndrome neonatal onset other text
EpilepsySyndNeontOnsetOTH
The free-text field related to 'Epilepsy syndrome neonatal onset type' specifying other text. Common epilepsy syndromes with onset in the neonatal period (<44 weeks gestational age)
Other, specify
  
Alphanumeric
Indicate only for < 44 weeks gestational age
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C18951
Epilepsy syndrome infant onset other text
EpilepsySyndInfantOnsetOTH
The free-text field related to 'Epilepsy syndrome infant onset type' specifying other text. Common epilepsy syndromes for infants, children less than 2 years of age.
Other, specify
  
Alphanumeric
Indicate only for children < 2 years old Infant is defined as <2 years
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C14472
Epilepsy syndrome age of onset type
EpilepsySyndromeAgeOnsetTyp
Age period during which the epilepsy syndrome first appeared
Syndromes by Age of Onset
Neonatal period;Infancy;Childhood;Adolescence - Adult;Less Specific Age Relationship;Distinctive Constellation;Other Localization Related Epilepsies;Other;
Less than 44 weeks gestational age;Children less than 2 years old;Children 2-12 years old;Children 12-18 years old and adults older than 18 years;;;;The epilepsy does not fit into one of these specific electro-clinical or distinctive constellations categories;
Alphanumeric
At least one age period should be recorded as present along with at least one syndrome that falls under that period
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome age of onset type
 
Multiple Pre-Defined Values Selected
       
C14470
Epilepsy syndrome likelihood present type
EpilepsySyndromePresLkhdTyp
Certainty of whether the participant/subject has or had the epilepsy syndrome for the particular age period
Present?
No;Possible;Probable;Definite;Unknown;N/A;
Not present;The summary of evidence suggests less than 50% confidence level;The summary of evidence suggests greater than 50% confidence level;The summary of evidence suggests 100% confidence level;The summary of evidence is not sufficient to support a finding;Not Applicable, to be used at the discretion of the Principal Investigator based on study design;
Alphanumeric
Choose one for each epilepsy syndrome in the applicable age of onset type
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome likelihood type
 
Single Pre-Defined Value Selected
       
C14473
Epilepsy syndrome infant onset type
EpilepsySyndInfantOnsetTyp
Common epilepsy syndromes for infants, children less than 2 years of age.
Infancy
Epilepsy of infancy with migrating focal seizures;West syndromes;Myoclonic epilepsy in infancy;Benign infantile epilepsy;Benign familial infantile epilepsy;Dravet syndrome;Myoclonic encephalopathy in nonprogressive disorders;Other, specify;
Epilepsy of infancy with migrating focal seizures;West syndromes;Myoclonic epilepsy in infancy (MEI);Benign infantile epilepsy;Benign familial infantile epilepsy;Dravet syndrome;Myoclonic encephalopathy in nonprogressive disorders;Other, specify;
Alphanumeric
Indicate only for children < 2 years old Infant is defined as <2 years
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome infant type
 
Single Pre-Defined Value Selected
       
C14471
Epilepsy syndrome neonatal onset type
EpilepsySyndNeontOnsetTyp
Common epilepsy syndromes with onset in the neonatal period (<44 weeks gestational age)
Neonatal Period
Benign familial neonatal epilepsy;Early myoclonic encephalopathy;Ohtahara syndrome;Other, specify;
Benign familial neonatal epilepsy (BFNE);Early myoclonic encephalopathy (EME);Ohtahara syndrome;Other, specify;
Alphanumeric
Indicate only for < 44 weeks gestational age
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome neonatal type
 
Single Pre-Defined Value Selected
       
C14475
Epilepsy syndrome childhood onset type
EpilepsySyndChildOnsetTyp
Common epilepsy syndromes for children, 2-12 years of age.
Childhood
Febrile seizures plus;Early onset benign childhood occipital epilepsy;Epilepsy with myoclonic atonic seizures;Benign childhood epilepsy with centrotemporal spikes;Autosomal-dominant nocturnal frontal lobe epilepsy;Late onset childhood occipital epilepsy;Epilepsy with myoclonic absences;Lennox-Gastaut syndrome;Epileptic encephalopathy with continuous spike-and-wave during sleep;Landau-Kleffner syndrome;Childhood absence epilepsy;Other, specify;
Febrile seizures plus (FS+, can start in infancy);Early onset benign childhood occipital epilepsy (Panayiotopoulos type);Epilepsy with myoclonic atonic seizures;Benign childhood epilepsy with centrotemporal spikes (BCECTS);Autosomal-dominant nocturnal frontal lobe epilepsy (ADNFLE);Late onset childhood occipital epilepsy (Gastaut type);Epilepsy with myoclonic absences;Lennox-Gastaut syndrome;Epileptic encephalopathy with continuous spike-and-wave during sleep (CSWS);Landau-Kleffner syndrome (LKS);Childhood absence epilepsy (CAE);Other, specify;
Alphanumeric
Indicate only for children 2-12 years old Child is defined as 2-12 years
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome childhood type
 
Single Pre-Defined Value Selected
       
C18952
Epilepsy syndrome childhood onset other text
EpilepsySyndChildOnsetOTH
The free-text field related to 'Epilepsy syndrome childhood onset type' specifying other text. Common epilepsy syndromes for children, 2-12 years of age.
Other, specify
  
Alphanumeric
Indicate only for children 2-12 years old Child is defined as 2-12 years
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C18953
Epilepsy syndrome adolescence adult onset other text
EpilepsySyndAdolAdltOnsOTH
The free-text field related to 'Epilepsy syndrome adolescence adult onset type' specifying other text. Common epilepsy syndromes for adolescents, children 12-18 years of age, and adults, person older than 18 years of age.
Other, specify
  
Alphanumeric
Indicate only for children 12-18 years old Adolescent is defined as 12-18 years Adult is defined as >18 years
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C14477
Epilepsy syndrome adolescence adult onset type
EpilepsySyndAdolAdltOnsTyp
Common epilepsy syndromes for adolescents, children 12-18 years of age, and adults, person older than 18 years of age.
Adolescence - Adult
Juvenile absence epilepsy;Other familial temporal lobe epilepsies;Juvenile myoclonic epilepsy;Progressive myoclonus epilepsies;Autosomal Dominant Epilepsy with Auditory Features;Epilepsy with generalized tonic-clonic seizures alone;Other, specify;
Juvenile absence epilepsy (JAE);Other familial temporal lobe epilepsies;Juvenile myoclonic epilepsy (JME);Progressive myoclonus epilepsies (PME);Autosomal Dominant Epilepsy with Auditory Features (ADEAF);Epilepsy with generalized tonic-clonic seizures alone;Other, specify;
Alphanumeric
Indicate only for children 12-18 years old Adolescent is defined as 12-18 years Adult is defined as >18 years
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome adolescence or adult type
 
Single Pre-Defined Value Selected
       
C14479
Epilepsy syndrome less specific age relationship type
EplpsySyndLessSpecAgeRelTyp
Common epilepsy syndromes that have a less specific age or no association with a specific age on onset.
Less Specific Age Relationship
Familial focal epilepsy with variable foci;Reflex epilepsies;
Familial focal epilepsy with variable foci (childhood to adult);Reflex epilepsies;
Alphanumeric
Choose all that apply, for subjects of any age
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome less specific age relationship type
 
Multiple Pre-Defined Values Selected
       
C14481
Epilepsy syndrome distinctive constellation type
EplpsySyndDistConstelTyp
Syndromes with distinctive constellations, diagnostically meaningful forms of epilepsy and may have implications for clinical treatment, particularly surgery.
Distinctive Constellations
Mesial temporal lobe epilepsy;Rasmussen syndrome;Gelastic seizures with hypothalamic hamartoma;
Mesial temporal lobe epilepsy;Rasmussen syndrome;Gelastic seizures with hypothalamic hamartoma;
Alphanumeric
Choose all that apply Diagnostically meaningful forms of epilepsy and may have implications for clinical treatment, particularly surgery
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome distinctive constellation type
 
Multiple Pre-Defined Values Selected
       
C14483
Epilepsy syndrome other localization type
EplpsySyndOthrLocalTyp
Epilepsy syndromes related to other localizations.
Other Localization Related Epilepsies
Temporal lobe epilepsy;Frontal lobe epilepsy;Occipital lobe epilepsy;Parietal lobe epilepsy;Focal epilepsy;
Temporal lobe epilepsy;Frontal lobe epilepsy;Occipital lobe epilepsy;Parietal lobe epilepsy;Focal epilepsy (specific localization unknown);
Alphanumeric
Choose all that apply
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndrome other localization related type
 
Multiple Pre-Defined Values Selected
       
C14485
Epilepsy syndromes distinct confidence level type
EplpsySyndmDstnctCnfdncLvlTyp
Confidence level that the two or more epilepsy syndromes selected as present are distinct syndromes
If two or more epilepsy syndromes were selected as present, rate the confidence level that these are distinct syndromes
No Confidence;Possible;Probable;Definite;Unknown;N/A;
The summary of evidence does not support a distinction;The summary of evidence suggests less than 50% confidence level;The summary of evidence suggests greater than 50% confidence level;The summary of evidence suggests 100% confidence level;The summary of evidence is not sufficient to support a finding;Not Applicable, to be used at the discretion of the Principal Investigator based on study design;
Alphanumeric
Choose one if two or more epilepsy syndromes were selected as present
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
1.0
10/5/2012
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Epilepsy syndromes distinct confidence level type
 
Single Pre-Defined Value Selected
       
C18502
Epilepsy syndrome unspecified type
EplpsySyndUnspecTyp
Epilepsy syndromes with unspecified relationships that do not fit into other specified categories.
Other
The epilepsy does not fit into one of these specific electro-clinical or distinctive constellations categories;Other, specify;
The epilepsy does not fit into one of these specific electro-clinical or distinctive constellations categories;Other, specify;
Alphanumeric
No instructions available
Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, Cross JH, van Emde Boas W, Engel J, French J, Glauser TA, Mathern GW, Moshé SL, Nordli D, Plouin P, Scheffer IE. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. Epub 2010 Feb 26. Freely available online at: http://www.ilae.org/Visitors/Centre/ctf/ctfoverview.cfm http://www.ilae-epilepsy.org/Visitors/Documents/ClassificationSummaryReportwebAug2009.pdf.
Adult;Pediatric
Supplemental
3.0
7/30/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
  
Single Pre-Defined Value Selected
       
C19072
Epilepsy syndrome unspecified other text
EpilepsySyndUnspecOTH
The free-text field related to 'Epilepsy syndrome unspecified type' specifying other text. Epilepsy syndromes with unspecified relationships that do not fit into other specified categories.
Other, specify
  
Alphanumeric
No instructions available
Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, Cross JH, van Emde Boas W, Engel J, French J, Glauser TA, Mathern GW, Moshé SL, Nordli D, Plouin P, Scheffer IE. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. Epub 2010 Feb 26. Freely available online at: http://www.ilae.org/Visitors/Centre/ctf/ctfoverview.cfm http://www.ilae-epilepsy.org/Visitors/Documents/ClassificationSummaryReportwebAug2009.pdf.
Adult;Pediatric
Supplemental
3.0
7/30/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C06005
Data collected date and time
DataCollDateTime
Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed.
Date form completed
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
7/24/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Data collected date and time
 
Free-Form Entry
       
C14134
Data valid through date and time
DataValidThroughDate
Date (and time, if applicable and known) the data collected are valid through
Information complete up to
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
EPILEPSY: Berg AT, Berkovic SF, Brodie MJ, Buchhalter J, et al. Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia. 2010 Apr;51(4):676-85. http://www.ilae-epilepsy.org/Visitors/Centre/ctf/ctfoverview.cfm
Adult;Pediatric
Supplemental–Highly Recommended
3.0
8/28/2013
Aliases for variable name not defined
Syndromes by Age of Onset
Classification
Disease/Injury Related Events
Data valid through date and time
 
Free-Form Entry
       
05-26-2017
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