|
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 |
|
|
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 |
|
|
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 |
|
|
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? |
|
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) |
|
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 |
|
|
PrenatalGeneticTesting |
Query
|
genetic_result |
String |
50
|
Recommended |
Any abnormal result |
|
|
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) |
|
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) |
|
|
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 |
|
|
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 |
|
|
NICU |
Query
|
ldnb_stayicuday |
Float |
|
Recommended |
If Yes, How Long (Days) |
|
|
NICUdays |
Query
|
nb_seizure |
String |
50
|
Required |
Newborn have seizures? |
|
999=NA/missing
|
|
Query
|
child_congenitaldef |
String |
50
|
Recommended |
Does the Child have a Congenital Defect (Cleft palate, cleft lip, other)? |
|
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 = 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 |
|
|
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 |
|
|
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? |
|
|
LostConsciousness |
Query
|
child_cerpalsy |
String |
50
|
Required |
Does (did) the Child have Cerebral Palsy? |
|
NK= Not known; NS = Not sure
|
CerebralPalsy |
Query
|
medprob_gen |
String |
50
|
Recommended |
Genetic Syndromes: Is there any known abnormality in this area |
|
|
GeneticCondition |
Query
|
medprob_genfragile |
String |
50
|
Required |
Child have Fragile X? |
|
999=NA/missing
|
FragileXSyndrome |
Query
|
child_downssynd |
String |
50
|
Required |
Does (did) the Child have Down's Syndrome? |
|
999=NA/missing
|
DownSyndrome |
Query
|
medprob_gentb |
String |
50
|
Required |
Child have Tuberous Sclerosis? |
|
999=NA/missing
|
TuberousSclerosis |
Query
|
medprob_genneuro |
String |
50
|
Required |
Child have Neurofibromatosis? |
|
999=NA/missing
|
Neurofibromatosis |
Query
|
medprob_genrett |
String |
50
|
Required |
Child has Rett Syndrome? |
|
999=NA/missing
|
RettSyndrome |
Query
|
medprob_genprader |
String |
50
|
Required |
Child have Prader Willi Syndrome? |
|
999=NA/missing
|
PraderWilliSyndrome |
Query
|
medprob_genangel |
String |
50
|
Required |
Child have Angelman Syndrome? |
|
999=NA/missing
|
AngelmanSyndrome |
Query
|
medprob_genother |
String |
50
|
Recommended |
Other chromosomal abnormality, disorder, or syndrome |
|
|
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? |
|
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? |
|
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. |
|
|
|