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Infant Medical History Questionnaire

172 Shared Subjects

Infant Medical History Questionnaire
Clinical Assessments
Med History
07/18/2013
infant_med_hx01
03/11/2019
View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Description Value Range Notes Aliases
subjectkey GUID Required The NDAR Global Unique Identifier (GUID) for research subject NDAR*
src_subject_id String 20 Required Subject ID how it's defined in lab/project
interview_date Date Required Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY InterviewYear
interview_age Integer Required Age in months at the time of the interview/test/sampling/imaging. 0::1440 Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported gender
Query respond_detail Integer Recommended Respondent detail 1::8;999 1 = Mother; 2 = Father; 3 = Other relative or custodial adult; 4 = Teacher or caregiver; 5 = Other specialist; 6 = Other; 7 = Child; 8= Spouse; 999 = Not available RelationshipToChild
Query preg_age_mom Integer Recommended Age of mother at the time of birth In years; 999=Unknown MotherAge
Query pg_pregno Integer Recommended How many times had the birth mother been pregnant before giving birth to the child being evaluated in this study (including that pregnancy)? PriorPregnancies
Query miscarriage Integer Recommended 3. Did any of these pregnancies end in miscarriage? 0;1;999 0 = No; 1 = Yes; 999 = Don't know
Query pg_miscarriageno Integer Recommended How many miscarriages had the mother had? Number_Miscarriage
Query pg_multpregno Integer Recommended How many babies in this pregnancy Number_Carried
Query numberlost Integer Recommended 4b. If more than one baby, did you lose any of these babies before delivery? 0;1 0 = No; 1 = Yes
Query medications Integer Recommended 5. Did you take any medicines or see any doctors to help you get pregnant? 0;1;999 0 = No; 1 = Yes; 999 = Don't know
Query med1 Integer Required If yes circle all interventions used:: Artificial insemination 0;1;999 0 = No; 1 = Yes
Query med2 Integer Required If yes circle all interventions used:: Medicine to induce egg production (eg clomid or pergonal) 0;1;999 0 = No; 1 = Yes
Query med3 Integer Required If yes circle all interventions used:: In vitro fertilization 0;1;999 0 = No; 1 = Yes
Query med4 Integer Required If yes circle all interventions used:: ICSI 0;1;999 0 = No; 1 = Yes
Query med5 Integer Required If yes circle all interventions used:: Sperm donor 0;1;999 0 = No; 1 = Yes
Query med6 Integer Required If yes circle all interventions used:: Egg donation 0;1;999 0 = No; 1 = Yes
Query med7 Integer Required If yes circle all interventions used:: Use of frozen eggs 0;1;999 0 = No; 1 = Yes
Query quesmoth_probhf String 50 Required Fever of 101 F or above
Yes;No;Don't Know
Fever6a
Query fever6atrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query fever6atrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query fever6atrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query quesmoth_probseiz String 50 Required Seizures
Yes;No;Don't Know
Seizures6b
Query seizures6btrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query seizures6btrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query seizures6btrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query quesmoth_probinfect String 50 Required Infection (e.g., Strep Throat or Urinary Tract) requiring antibiotics
No;Yes;Don't Know
Infection6c
Query infection6ctrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query infection6ctrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query infection6ctrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query quesmoth_probv String 255 Recommended Viral illness 0 = No; 1 = Yes; 999 = Don't know ViralIllness6d
Query viralillness6dtrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query viralillness6dtrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query viralillness6dtrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query preg_dxdrug String 10 Required Used prescription medications during pregnancy?
Yes; No; NK
NK = Not known PrescriptionMed
Query prescription7a String 255 Recommended list by name and note what trimesters you took them in
Query prescription7atrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query prescription7atrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query prescription7atrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query prescription7adk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query prescription7b String 255 Recommended list by name and note what trimesters you took them in
Query prescription7btrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query prescription7btrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query prescription7btrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query prescription7bdk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query prescription7c String 255 Recommended list by name and note what trimesters you took them in
Query prescription7ctrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query prescription7ctrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query prescription7ctrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query prescription7cdk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query prescription7d String 255 Recommended list by name and note what trimesters you took them in
Query prescription7dtrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query prescription7dtrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query prescription7dtrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query prescription7ddk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query prescription7e String 255 Recommended list by name and note what trimesters you took them in
Query prescription7etrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query prescription7etrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query prescription7etrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query prescription7edk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query alhx Integer Required Prenatal exposure to alcohol 0::1;999 0 = No exposure; 1 = Exposed Alcohol
Query alcoholhowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query alcoholtrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query alcoholtrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query alcoholtrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query alcoholdk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query mahx Integer Required Prenatal exposure to marijuana 0::1;999 0 = No exposure; 1 = Exposed Marijuana
Query marijuanahowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query marijuanatrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query marijuanatrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query marijuanatrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query marijuanadk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query expcoc Integer Required Prenatal exposure to cocaine 0::1;999 0 = No exposure; 1 = Exposed Cocaine
Query cocainehowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query cocainetrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query cocainetrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query cocainetrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query cocainedk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query heroin Integer Required Heroin: 0;1;999 0 = No; 1 = Yes
Query heroinhowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query herointrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query herointrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query herointrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query heroindk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query lsd Integer Required LSD: 0;1;999 0 = No; 1 = Yes
Query lsdhowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query lsdtrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query lsdtrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query lsdtrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query lsddk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query methadone Integer Required Methadone: 0;1;999 0 = No; 1 = Yes
Query methadonehowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query methadonetrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query methadonetrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query methadonetrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query methadonedk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query amphetamines Integer Required Amphetamines: 0;1;999 0 = No; 1 = Yes
Query amphetamineshowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query amphetaminestrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query amphetaminestrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query amphetaminestrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query amphetaminesdk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query presmed_painkill String 50 Required In this pregnancy, did the birth mother take any of the following prescription medications - Pain killers (e.g., Darvon, Demerol, Dilaudid, Morphine, Percocet, Percodan, Tylenol with codeine, Codeine preparations)
Yes;No;999
999=NA/missing pain_killers
Query pain_killershowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query pain_killerstrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query pain_killerstrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query pain_killerstrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query pain_killersdk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query ecstasy Integer Required Ecstasy: 0;1;999 0 = No; 1 = Yes
Query ecstasyhowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query ecstasytrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query ecstasytrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query ecstasytrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query ecstasydk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query glue Integer Required Glue/inhalants: 0;1;999 0 = No; 1 = Yes
Query gluehowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query gluetrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query gluetrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query gluetrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query gluedk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query other Integer Required Other prevent dose increase 0;1;999 0 = No; 1 = Yes
otherspecify String 255 Recommended Specify other
Query otherhowoften Integer Recommended How often 1;2;3;999 1 = 1-3 times; 2 = 1 time per week; 3 = More then 1 time per week; 999 = Don't know
Query othertrimester1 Integer Recommended Trimester: 1 0;1 0 = No; 1 = Yes
Query othertrimester2 Integer Recommended Trimester: 2 0;1 0 = No; 1 = Yes
Query othertrimester3 Integer Recommended Trimester: 3 0;1 0 = No; 1 = Yes
Query otherdk Integer Recommended Trimester: Don't know 0;1 0 = No; 1 = Yes
Query genetic_test String 50 Recommended Genetic Testing Performed
No;Yes;Don't know
PrenatalGeneticTesting
Query genetic_result String 50 Recommended Any abnormal result
No;Yes;Don't know
PGTabnormalities
pgtabnormalitiesdescribe String 255 Recommended Describe:
Query prenatalultrasound Integer Recommended 10. Did the doctors ever tell you they were concerned about a prenatal ultrasound? 0;1;999 0 = No; 1 = Yes; 999 = Don't know
Query prenatalultrasoundconcerns String 255 Recommended Describe concerns:
Query ldnb_whenml Float Recommended When did the birth mother go into labor (Weeks)
1 :: 48;999
999 = Don't know WeeksPregnantFirstLabor
Query tostopfirstlabor Integer Recommended 2. Did you get any medicines or IV's to stop labor? 0;1;999 0 = No; 1 = Yes; 999 = Don't know
Query medicinestostoplabor String 255 Recommended If yes, which medication:
Query numberofbabies Integer Recommended 5. How many babies did you deliver in this pregnancy? (full-term is considered 40 weeks)
Query weeksdelivery Float Recommended 3. How many weeks pregnant were you when you delivered the baby? (full-term is considered 40 weeks) 0::50;999 999 = Don't know
Query ldnb_dociml String 50 Required Did the doctor need to induce the birth mothers labor (i.e. get her labor started)
No;Yes;Don't Know
ToStartLabor
Query medicinestostartlabor String 255 Recommended If yes, which medication:
Query birth_weight_lbs Float Recommended Birth weight pounds BirthWeightPounds
Query birth_weight_oz Float Recommended Birth weight ounces BirthWeightOunces
Query info_apgar1 String 50 Recommended Apgars 1 min. At1Minute
Query info_apgar5 String 50 Recommended Apgars 5 min. At5Minutes
Query apgardonotknow Integer Recommended Apgars Don't Know 0;1 0 = No; 1 = Yes
Query ldnb_resuscitation String 50 Required Did this baby need to have resuscitation such as having the nurses and doctors help him/her breathe or get his/her heart started in the delivery room
No;Yes;Don't Know
resuscitation
Query resuscitationdescribe String 255 Recommended Describe:
Query ldnb_hosptotalbabyday Float Recommended How many days total did this baby stay in the hospital (after delivery up until discharge, including the neonatal ICU) (days) 0 :: 365 StayInHospital
Query ldnb_stayicu String 50 Recommended Did this baby stay in the neonatal intensive care unit
No;Yes;Don't Know
NICU
Query ldnb_stayicuday Float Recommended If Yes, How Long (Days) NICUdays
Query nb_seizure String 50 Required Newborn have seizures?
Yes;No;999
999=NA/missing
Query child_congenitaldef String 50 Recommended Does the Child have a Congenital Defect (Cleft palate, cleft lip, other)?
Yes; No; NK; NS
NK= Not known; NS = Not sure Cleft_lip
Query abnormal_shape Integer Required 3. Please circle any of the following conditions your baby had as a newborn infant:: Abnormal shape of hands, feet, arms or legs 0;1;999 0 = No; 1 = Yes
Query cataracts Integer Required 3. Please circle any of the following conditions your baby had as a newborn infant:: Cataracts 0;1;999 0 = No; 1 = Yes
Query heart_disease Integer Required 3. Please circle any of the following conditions your baby had as a newborn infant:: Heart disease 0;1;999 0 = No; 1 = Yes
Query kidney_disease Integer Required 3. Please circle any of the following conditions your baby had as a newborn infant:: Kidney disease 0;1;999 0 = No; 1 = Yes
Query abnormality String 255 Recommended List any other abnormalities at birth that required a doctor to see him/her:
Query seizures Integer Required Does (did) the subject have Seizures?
0;1;2;999
0 = No; 1 = Yes; 2 = Unknown; 999 =NA/missing Convulsion
Query firstmonth Integer Recommended First month of life: 0;1 0 = No; 1 = Yes
Query months2_12 Integer Recommended 2-12 months: 0;1 0 = No; 1 = Yes
Query months13_24 Integer Recommended 13-24 months: 0;1 0 = No; 1 = Yes
Query years2_5 Integer Recommended 2-5 years: 0;1 0 = No; 1 = Yes
Query after5years Integer Recommended after 5 years: 0;1 0 = No; 1 = Yes
Query medprob_neurofever String 50 Recommended If Yes, Was the disease Seizures with fever only
No;Yes;Don't know
HighFever
Query abnormalheadscan Integer Recommended 3. Has your child ever had a picture of the brain (eg an MRI or CT scan of the head) that you were told was not normal? 0;1;999 0 = No; 1 = Yes; 999 = Don't know
Query medprob_neuromening String 50 Recommended If Yes, Was the disease History of meningitis or encephalitis
No;Yes;Don't know
Meningitis
Query meningitisage Integer Recommended If yes, at what age? 0::99
Query medprob_cl String 50 Required 5. Has your child ever lost consciousness with a head injury?
No;Yes;Don't know
LostConsciousness
Query child_cerpalsy String 50 Required Does (did) the Child have Cerebral Palsy?
Yes; No; NK; NS
NK= Not known; NS = Not sure CerebralPalsy
Query medprob_gen String 50 Recommended Genetic Syndromes: Is there any known abnormality in this area
No;Yes;Don't Know
GeneticCondition
Query medprob_genfragile String 50 Required Child have Fragile X?
Yes;No;999
999=NA/missing FragileXSyndrome
Query child_downssynd String 50 Required Does (did) the Child have Down's Syndrome?
Yes;No;999
999=NA/missing DownSyndrome
Query medprob_gentb String 50 Required Child have Tuberous Sclerosis?
Yes;No;999
999=NA/missing TuberousSclerosis
Query medprob_genneuro String 50 Required Child have Neurofibromatosis?
Yes;No;999
999=NA/missing Neurofibromatosis
Query medprob_genrett String 50 Required Child has Rett Syndrome?
Yes;No;999
999=NA/missing RettSyndrome
Query medprob_genprader String 50 Required Child have Prader Willi Syndrome?
Yes;No;999
999=NA/missing PraderWilliSyndrome
Query medprob_genangel String 50 Required Child have Angelman Syndrome?
Yes;No;999
999=NA/missing AngelmanSyndrome
Query medprob_genother String 50 Recommended Other chromosomal abnormality, disorder, or syndrome
Yes;No
OtherSyndrome
medprob_genother_cmt String 255 Recommended Other chromosomal abnormality, disorder, or syndrome (specify) OtherSyndromeDescribe
Query testresult Integer Recommended Abnormal chromosome test result 0;1 0 = No; 1 = Yes
testresultdescribe String 255 Recommended Abnormal chromosome test result: (describe)
Query autismsisterbrother Integer Recommended Autism/PDDNOS/Asperger Syndrome: Sister/Brother 0;1 0 = No; 1 = Yes
Query autismhalfsisterbrother Integer Recommended Autism/PDDNOS/Asperger Syndrome: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query autismparent Integer Recommended Autism/PDDNOS/Asperger Syndrome: Parent 0;1 0 = No; 1 = Yes
Query autismgrandparent Integer Recommended Autism/PDDNOS/Asperger Syndrome: Grand Parent 0;1 0 = No; 1 = Yes
Query autismauntuncle Integer Recommended Autism/PDDNOS/Asperger Syndrome: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query autismfirstcousin Integer Recommended Autism/PDDNOS/Asperger Syndrome: 1st Cousin 0;1 0 = No; 1 = Yes
Query mentalsisterbrother Integer Recommended Mental retardation: Sister/Brother 0;1 0 = No; 1 = Yes
Query mentalhalfsisterbrother Integer Recommended Mental retardation: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query mentalparent Integer Recommended Mental retardation: Parent 0;1 0 = No; 1 = Yes
Query mentalgrandparent Integer Recommended Mental retardation: Grand Parent 0;1 0 = No; 1 = Yes
Query mentalauntuncle Integer Recommended Mental retardation: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query mentalfirstcousin Integer Recommended Mental retardation: 1st Cousin 0;1 0 = No; 1 = Yes
Query seizuressisterbrother Integer Recommended Seizures: Sister/Brother 0;1 0 = No; 1 = Yes
Query seizureshalfsisterbrother Integer Recommended Seizures: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query seizuresparent Integer Recommended Seizures: Parent 0;1 0 = No; 1 = Yes
Query seizuresgrandparent Integer Recommended Seizures: Grand Parent 0;1 0 = No; 1 = Yes
Query seizuresauntuncle Integer Recommended Seizures: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query seizuresfirstcousin Integer Recommended Seizures: 1st Cousin 0;1 0 = No; 1 = Yes
Query tuberoussisterbrother Integer Recommended Tuberous Sclerosis: Sister/Brother 0;1 0 = No; 1 = Yes
Query tuberoushalfsisterbrother Integer Recommended Tuberous Sclerosis: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query tuberousparent Integer Recommended Tuberous Sclerosis: Parent 0;1 0 = No; 1 = Yes
Query tuberousgrandparent Integer Recommended Tuberous Sclerosis: Grand Parent 0;1 0 = No; 1 = Yes
Query tuberousauntuncle Integer Recommended Tuberous Sclerosis: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query tuberousfirstcousin Integer Recommended Tuberous Sclerosis: 1st Cousin 0;1 0 = No; 1 = Yes
Query speechsisterbrother Integer Recommended Speech Delay requiring therapy: Sister/Brother 0;1 0 = No; 1 = Yes
Query speechhalfsisterbrother Integer Recommended Speech Delay requiring therapy: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query speechparent Integer Recommended Speech Delay requiring therapy: Parent 0;1 0 = No; 1 = Yes
Query speechgrandparent Integer Recommended Speech Delay requiring therapy: Grand Parent 0;1 0 = No; 1 = Yes
Query speechauntuncle Integer Recommended Speech Delay requiring therapy: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query speechfirstcousin Integer Recommended Speech Delay requiring therapy: 1st Cousin 0;1 0 = No; 1 = Yes
Query learningsisterbrother Integer Recommended Learning Disabilities: Sister/Brother 0;1 0 = No; 1 = Yes
Query learninghalfsisterbrother Integer Recommended Learning Disabilities: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query learningparent Integer Recommended Learning Disabilities: Parent 0;1 0 = No; 1 = Yes
Query learninggrandparent Integer Recommended Learning Disabilities: Grand Parent 0;1 0 = No; 1 = Yes
Query learningauntuncle Integer Recommended Learning Disabilities: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query learningfirstcousin Integer Recommended Learning Disabilities: 1st Cousin 0;1 0 = No; 1 = Yes
Query obsessivesisterbrother Integer Recommended Obsessive-Compulsive Disorder: Sister/Brother 0;1 0 = No; 1 = Yes
Query obsessivehalfsisterbrother Integer Recommended Obsessive-Compulsive Disorder: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query obsessiveparent Integer Recommended Obsessive-Compulsive Disorder: Parent 0;1 0 = No; 1 = Yes
Query obsessivegrandparent Integer Recommended Obsessive-Compulsive Disorder: Grand Parent 0;1 0 = No; 1 = Yes
Query obsessiveauntuncle Integer Recommended Obsessive-Compulsive Disorder: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query obsessivefirstcousin Integer Recommended Obsessive-Compulsive Disorder: 1st Cousin 0;1 0 = No; 1 = Yes
Query ticssisterbrother Integer Recommended Tics or Tourette Syndrome: Sister/Brother 0;1 0 = No; 1 = Yes
Query ticshalfsisterbrother Integer Recommended Tics or Tourette Syndrome: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query ticsparent Integer Recommended Tics or Tourette Syndrome: Parent 0;1 0 = No; 1 = Yes
Query ticsgrandparent Integer Recommended Tics or Tourette Syndrome: Grand Parent 0;1 0 = No; 1 = Yes
Query ticsauntuncle Integer Recommended Tics or Tourette Syndrome: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query ticsfirstcousin Integer Recommended Tics or Tourette Syndrome: 1st Cousin 0;1 0 = No; 1 = Yes
Query attentionsisterbrother Integer Recommended Attention Deficit Disorder: Sister/Brother 0;1 0 = No; 1 = Yes
Query attentionhalfsisterbrother Integer Recommended Attention Deficit Disorder: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query attentionparent Integer Recommended Attention Deficit Disorder: Parent 0;1 0 = No; 1 = Yes
Query attentiongrandparent Integer Recommended Attention Deficit Disorder: Grand Parent 0;1 0 = No; 1 = Yes
Query attentionauntuncle Integer Recommended Attention Deficit Disorder: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query attentionfirstcousin Integer Recommended Attention Deficit Disorder: 1st Cousin 0;1 0 = No; 1 = Yes
Query conductsisterbrother Integer Recommended Oppositional Defiant/Conduct Disorder: Sister/Brother 0;1 0 = No; 1 = Yes
Query conducthalfsisterbrother Integer Recommended Oppositional Defiant/Conduct Disorder: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query conductparent Integer Recommended Oppositional Defiant/Conduct Disorder: Parent 0;1 0 = No; 1 = Yes
Query conductgrandparent Integer Recommended Oppositional Defiant/Conduct Disorder: Grand Parent 0;1 0 = No; 1 = Yes
Query conductauntuncle Integer Recommended Oppositional Defiant/Conduct Disorder: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query conductfirstcousin Integer Recommended Oppositional Defiant/Conduct Disorder: 1st Cousin 0;1 0 = No; 1 = Yes
Query anxietysisterbrother Integer Recommended Anxiety or Panic disorder: Sister/Brother 0;1 0 = No; 1 = Yes
Query anxietyhalfsisterbrother Integer Recommended Anxiety or Panic disorder: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query anxietyparent Integer Recommended Anxiety or Panic disorder: Parent 0;1 0 = No; 1 = Yes
Query anxietygrandparent Integer Recommended Anxiety or Panic disorder: Grand Parent 0;1 0 = No; 1 = Yes
Query anxietyauntuncle Integer Recommended Anxiety or Panic disorder: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query anxietyfirstcousin Integer Recommended Anxiety or Panic disorder: 1st Cousin 0;1 0 = No; 1 = Yes
Query depressionsisterbrother Integer Recommended Depression: Sister/Brother 0;1 0 = No; 1 = Yes
Query depressionhalfsisterbrother Integer Recommended Depression: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query depressionparent Integer Recommended Depression: Parent 0;1 0 = No; 1 = Yes
Query depressiongrandparent Integer Recommended Depression: Grand Parent 0;1 0 = No; 1 = Yes
Query depressionauntuncle Integer Recommended Depression: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query depressionfirstcousin Integer Recommended Depression: 1st Cousin 0;1 0 = No; 1 = Yes
Query bipolarssisterbrother Integer Recommended Manic Depression or Bipolar Illness: Sister/Brother 0;1 0 = No; 1 = Yes
Query bipolarshalfsisterbrother Integer Recommended Manic Depression or Bipolar Illness: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query bipolarsparent Integer Recommended Manic Depression or Bipolar Illness: Parent 0;1 0 = No; 1 = Yes
Query bipolarsgrandparent Integer Recommended Manic Depression or Bipolar Illness: Grand Parent 0;1 0 = No; 1 = Yes
Query bipolarsauntuncle Integer Recommended Manic Depression or Bipolar Illness: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query bipolarsfirstcousin Integer Recommended Manic Depression or Bipolar Illness: 1st Cousin 0;1 0 = No; 1 = Yes
Query schizophreniasisterbrother Integer Recommended Schizophrenia: Sister/Brother 0;1 0 = No; 1 = Yes
Query schizophreniahalfsisterbrother Integer Recommended Schizophrenia: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query schizophreniaparent Integer Recommended Schizophrenia: Parent 0;1 0 = No; 1 = Yes
Query schizophreniagrandparent Integer Recommended Schizophrenia: Grand Parent 0;1 0 = No; 1 = Yes
Query schizophreniaauntuncle Integer Recommended Schizophrenia: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query schizophreniafirstcousin Integer Recommended Schizophrenia: 1st Cousin 0;1 0 = No; 1 = Yes
Query psychiatricsisterbrother Integer Recommended A history of being admitted to a hospital for a psychiatric illness: Sister/Brother 0;1 0 = No; 1 = Yes
Query psychiatrichalfsisterbrother Integer Recommended A history of being admitted to a hospital for a psychiatric illness: 1/2 sister/ 1/2 brother 0;1 0 = No; 1 = Yes
Query psychiatricparent Integer Recommended A history of being admitted to a hospital for a psychiatric illness: Parent 0;1 0 = No; 1 = Yes
Query psychiatricgrandparent Integer Recommended A history of being admitted to a hospital for a psychiatric illness: Grand Parent 0;1 0 = No; 1 = Yes
Query psychiatricauntuncle Integer Recommended A history of being admitted to a hospital for a psychiatric illness: Aunt/Uncle 0;1 0 = No; 1 = Yes
Query psychiatricfirstcousin Integer Recommended A history of being admitted to a hospital for a psychiatric illness: 1st Cousin 0;1 0 = No; 1 = Yes
notes String 200 Recommended Any additional notes
Query demosam_021 Integer Recommended Age of biological father when child was born? preg_age_dad
Query prenataldifficulties Integer Recommended Were there any additional prenatal difficulties? (new one) 1;0 1=Yes, 0=No
nicureason String 100 Recommended New prenatal dificulties, specify
rev_mouthcleftlip String 50 Recommended Is there a cleft lip and/or cleft palate?
Yes;No;NK
NK = Not known
Query other_disease Integer Recommended Please circle any of the following conditions your baby had as a newborn infant:: Other 1 1=Checked
newborn_cond String 100 Recommended Describe other conditions of newborn
mribrainscan String 10 Recommended Did the subject take an MRI scan of brain?
TRUE;FALSE;UNKNOWN;NK
NK = Not known mri
Query whatage Integer Recommended Brain scan, age, years 0::99 0~99
Query resultsnormal Integer Recommended Brain MRI. Were the results normal? 1;0 1=Yes, 0=No
Query ophthalmologist Integer Recommended Has your child seen by an ophthalmologist? 1;0 1=Yes, 0=No
abnormality_vis String 100 Recommended What were there any abnormalities or issues with your child's vision?
monthsdays String 6 Recommended at what age did your child start having seizures (in months or in days if started prior to one months)? months;days months, days
Query monthsdaysx Integer Recommended at what age did your child start having seizures (in months or in days if started prior to one months)? Year 0::99 0~99
antiepilepticmed String 100 Recommended What antiepileptic medications is your child currently taking?
Query infantilespasmsever Integer Recommended Does your child have or have they ever had Infantile Spasms? 1;0 1=Yes, 0=No
Query diagnosisage Integer Recommended Age of diagnosis (onset) for Infantile Spasms 0::99 0~99
Query diagnosislength Integer Recommended Infantile Spasms. If the spasms are or have been controlled. If they were controlled but then returned please note the length of time that the spasms were controlled. ( days) 0::999 0~999
Query epilepticus Integer Recommended Has your child ever been in status epilepticus? 1;0 1=Yes, 0=No
Query epilepticusstatus Integer Recommended Status epilepticus. How many times and do you remember the duration of the status epilepticus? (status epilepticus is defines as seizing greateer than 30 mins) 0::99 0~99
Query seizuresfrequency Integer Recommended 8. Are your child's seizures controlled? If not, what is the frequency of seizures (daily, weekly, monthly). 1;2;3;4;5 1=Less than 1 per month, 2=Monthly, 3=Weekly, 4=Daily, 5=More than 1 per day
Query complexpartial Integer Recommended Seizures. Complex Partial: 1 1=Checked
Query complexpartial_c Integer Recommended Seizures. Controlled (Complex Partial): 1 1=Checked
Query generalized Integer Recommended Seizures. Generalized: 1 1=Checked
Query generalized_c Integer Recommended Seizures. Controlled (Generalized): 1 1=Checked
Query dropseizures Integer Recommended Drop Seizures: 1 1=Checked
Query dropseizures_c Integer Recommended Controlled (Drop Seizures): 1 1=Checked
Query infantilespasms Integer Recommended Infantile Spasms: 1 1=Checked
Query infantilespasms_c Integer Recommended Controlled (Infantile Spasms): 1 1=Checked
Query otherspasm Integer Recommended Spasm. Other: 1 1=Checked
seiz_otherspecify String 50 Recommended Other Spasm, Specify
Query otherspasm_c Integer Recommended Seizures. Controlled (Other): 1 1=Checked
Query seizurefreelength Integer Recommended If the seizures are controlled then what is the length of time that your child has been seizure free? ( days) 0::99 0~99
allantiepileptics String 100 Recommended What are all the antiepileptics that your child has ever been on?
Query tscage Integer Recommended At what age was your child diagnosed with TSC or 22q11 ( years) 0::99 0~99
tscdiagnosis String 100 Recommended Child was diagnosed with TSC or 22q11 ( years). How was the diagnosis made?
Query tscgenetictesting Integer Recommended Has your child had genetic testing for TSC or22q11, 1;0 1=Yes, 0=No
Query tscresults Integer Recommended Genetic testing for TSC or22q11. What were the results? 1;2 1=TSC1, 2=TSC2
Query affinitor Integer Recommended 3. Is your child on Affinitor, or have they ever been on Affinitor. 1;0 1=Yes, 0=No
affinitorlength String 100 Recommended Treatment time on Affinitor.
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

At the top of this page you can also:

  • Use the search bar to filter the elements displayed. This will not filter on the Size of Required columns
  • Download a copy of this definition in CSV format
  • Download a blank CSV submission template prepopulated with the correct structure header rows ready to fill with subject records and upload

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