CDE Detailed Report | NINDS Common Data Elements

Disease: Epilepsy
Subdomain Name: Classification
CRF: Syndromes by Age of Onset

Displaying 1 - 18 of 18

CDE ID	CDE Name	Variable Name	Definition	Short Description	Question Text	Permissible Values	Description	Data Type	Disease Specific Instructions	Disease Specific Reference	Population	Classification (e.g., Core)	Version Number	Version Date	CRF Name (CRF Module / Guidance)	Subdomain Name	Domain Name	Size	Input Restrictions
C14475	Epilepsy syndrome childhood onset type	EpilepsySyndChildOnsetTyp	Common epilepsy syndromes for children, 2-12 years of age	Common epilepsy syndromes for children, 2-12 years of ag	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	3.00	2013-08-28 16:08:00.453	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	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 categorie	Other, specify			Alphanumeric		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	3.00	2013-07-30 14:29:49.047	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	Common epilepsy syndromes for adolescents, children 12-18 years of age, and adults, person older than 18 years of ag	Adolescence - Adult	Juvenile absence epilepsy;Juvenile myoclonic epilepsy;Progressive myoclonus epilepsies;Autosomal Dominant Epilepsy with Auditory Features;Other familial temporal lobe epilepsies;Epilepsy with generalized tonic-clonic seizures alone;Other, specify	Juvenile absence epilepsy (JAE);Juvenile myoclonic epilepsy (JME);Progressive myoclonus epilepsies (PME);Autosomal Dominant Epilepsy with Auditory Features (ADEAF);Other familial temporal lobe epilepsies;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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		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	Common epilepsy syndromes that have a less specific age or no association with a specific age on onse	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		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	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Multiple Pre-Defined Values Selected
C14483	Epilepsy syndrome other localization type	EplpsySyndOthrLocalTyp	Epilepsy syndromes related to other localizations	Epilepsy syndromes related to other localization	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Multiple Pre-Defined Values Selected
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 (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performe	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	3.00	2013-07-24 21:00:23.88	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Free-Form Entry
C14485	Epilepsy syndromes distinct confidence level type	EplpsySyndmDstnctCnfdncLvlTyp	Confidence level that the two or more epilepsy syndromes selected as present are distinct syndromes	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	1.00	2012-10-05 00:00:00.0	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Single Pre-Defined Value Selected
C14134	Data valid through date and time	DataValidThroughDateTime	Date (and time, if applicable and known) the data collected are valid through	Date 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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Free-Form Entry
C18502	Epilepsy syndrome unspecified type	EplpsySyndUnspecTyp	Epilepsy syndromes with unspecified relationships that do not fit into other specified categories	Epilepsy syndromes with unspecified relationships that do not fit into other specified categorie	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		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	3.00	2013-07-30 14:29:49.047	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Single Pre-Defined Value 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	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Single Pre-Defined Value Selected
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)	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	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events	4000	Free-Form Entry
C14471	Epilepsy syndrome neonatal onset type	EpilepsySyndNeontOnsetTyp	Common epilepsy syndromes with onset in the neonatal period (<44 weeks gestational age)	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	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Single Pre-Defined Value Selected
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	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 ag	Other, specify			Alphanumeric	Indicate only for children	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	3.00	2013-08-28 16:08:00.453	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	Age period during which the epilepsy syndrome first appeare	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Multiple Pre-Defined Values 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	The free-text field related to 'Epilepsy syndrome childhood onset type' specifying other text. Common epilepsy syndromes for children, 2-12 years of ag	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events	4000	Free-Form Entry
C14473	Epilepsy syndrome infant onset type	EpilepsySyndInfantOnsetTyp	Common epilepsy syndromes for infants, children less than 2 years of age	Common epilepsy syndromes for infants, children less than 2 years of ag	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	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events		Single Pre-Defined Value Selected
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	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 ag	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	3.00	2013-08-28 16:08:00.453	Syndromes by Age of Onset	Classification	Disease/Injury Related Events	4000	Free-Form Entry