CDE Detailed Report

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 Min Value Max Value Measurement Type External Id Loinc External Id Snomed External Id caDSR External Id CDISC
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

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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

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