|
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_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.
|
|
|
interview_date |
Date |
|
Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
|
|
sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
gender |
|
abnormalbpdatedd |
Date |
|
Recommended |
Other renal abnormality Abnormal BP Date |
|
|
otherrenalabnormalityabnormalb |
Query
|
abnormalbpimaging |
String |
25
|
Recommended |
Other renal abnormality Abnormal BP Imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityabnormalb5 |
Query
|
abnormalbpongoing |
String |
5
|
Recommended |
Other renal abnormality Abnormal BP Ongoing |
Yes; No
|
|
otherrenalabnormalityabnormalb4 |
|
agenesisdatedd |
Date |
|
Recommended |
Other renal abnormality Agenesis Date |
|
|
otherrenalabnormalityagenesisd |
Query
|
agenesisimaging |
String |
25
|
Recommended |
Other renal abnormality Agenesis imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityagenesisi |
Query
|
agenesisongoing |
String |
5
|
Recommended |
Other renal abnormality Agenesis Ongoing |
Yes; No
|
|
otherrenalabnormalityagenesiso |
|
hydronephrosisdatedd |
Date |
|
Recommended |
Other renal abnormality Hydronephrosis Date |
|
|
otherrenalabnormalityhydroneph |
Query
|
hydronephrosisimaging |
String |
25
|
Recommended |
Other renal abnormality Hydronephrosis imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityhydroneph5 |
Query
|
hydronephrosisongoing |
String |
5
|
Recommended |
Other renal abnormality Hydronephrosis Ongoing |
Yes; No
|
|
otherrenalabnormalityhydroneph4 |
|
hypoplasiadatedd |
Date |
|
Recommended |
Other renal abnormality Hypoplasia Date |
|
|
otherrenalabnormalityhypoplasi |
Query
|
hypoplasiaongoing |
String |
5
|
Recommended |
Other renal abnormality Hypoplasia Ongoing |
Yes; No
|
|
otherrenalabnormalityhypoplasi4 |
Query
|
hypoplasiaimaging |
String |
25
|
Recommended |
Other renal abnormality Hypoplasia imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityhypoplasi5 |
Query
|
orenalab |
String |
10
|
Recommended |
Other renal abnormality |
Yes; No; Unknown; N/A
|
|
otherrenalabnormality |
Query
|
orenalab_otherongo |
String |
5
|
Recommended |
Other renal abnormality Other Ongoing |
Yes; No
|
|
otherrenalabnormalityotherongo |
Query
|
orenalab_otherimag |
String |
25
|
Recommended |
Other renal abnormality If Other imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityotherimag |
|
orenalab_otherdd |
Date |
|
Recommended |
Other renal abnormality Other DD |
|
|
otherrenalabnormalityotherdd |
|
orenalab_otherspec |
String |
150
|
Recommended |
Other renal abnormality Other specify |
|
|
otherrenalabnormalityotherspec |
|
utidatedd |
Date |
|
Recommended |
Other renal abnormality UTI Date |
|
|
otherrenalabnormalityutidatedd |
Query
|
utiongoing |
String |
5
|
Recommended |
Other renal abnormality UTI Ongoing |
Yes; No
|
|
renalabnormalityutiongoing |
Query
|
utiimaging |
String |
25
|
Recommended |
Other renal abnormality UTI imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityutiimagin |
|
vurdatedd |
Date |
|
Recommended |
Other renal abnormality VUR Date |
|
|
otherrenalabnormalityvurdatedd |
Query
|
vurimaging |
String |
25
|
Recommended |
Other renal abnormality VUR imaging |
Renal/bladder US; VCUG
|
|
otherrenalabnormalityvurimagin |
Query
|
vurongoing |
String |
5
|
Recommended |
Other renal abnormality VUR Ongoing |
Yes; No
|
|
otherrenalabnormalityvurongoin |
Query
|
rev_gastroother |
String |
50
|
Recommended |
Other feeding difficulties |
Yes;No;NK
|
NK = Not known
|
ot_fdif, otherfeedingdifficulties |
|
ot_fdif_datedd |
Date |
|
Recommended |
Other feeding difficulties Date |
|
|
otherfeedingdifficultiesdatedd |
Query
|
ot_fdif_ongoin |
String |
5
|
Recommended |
Other feeding difficulties Ongoing |
Yes; No
|
|
otherfeedingdifficultiesongoin |
Query
|
ot_fdif_specif |
String |
200
|
Recommended |
Other feeding difficulties If yes specify |
|
|
otherfeedingdifficultiesifyess, otherfeedingdifficultiesspecif |
Query
|
rev_pulbreathab |
String |
50
|
Recommended |
Abnormal Breathing |
Yes;No;NK
|
NK = Not known
|
abnormalbreathing |
|
abnormalbreathingdatedd |
Date |
|
Recommended |
Abnormal breathing Date |
|
|
|
Query
|
abnormalbreathingongoing |
String |
5
|
Recommended |
Abnormal breathing Ongoing |
Yes; No
|
|
|
Query
|
rev_rythm |
String |
10
|
Recommended |
Abnormal rhythm or heart rate |
Yes;No;NK
|
NK = Not known
|
ab_hrate, abnormalrhythmorheartrate |
|
ab_hratedated |
Date |
|
Recommended |
Abnormal rhythm or heart rate Date |
|
|
abnormalrhythmorheartratedated |
Query
|
ab_hrateongoi |
String |
5
|
Recommended |
Abnormal rhythm or heart rate Ongoing |
Yes; No
|
|
abnormalrhythmorheartrateongoi |
|
alt_otr_cs |
String |
25
|
Recommended |
Alteration in other CSrelevant gene eg SDH |
|
|
alterationinothercsrelevantgen |
Query
|
anemia |
String |
10
|
Recommended |
Anemia |
Yes; No; Unknown; N/A
|
|
|
|
anemiadatedd |
Date |
|
Recommended |
Anemia Date |
|
|
|
Query
|
anemiaongoing |
String |
5
|
Recommended |
Anemia Ongoing |
Yes; No
|
|
|
Query
|
child_anxiety |
String |
50
|
Recommended |
Does (did) the Child have an Anxiety Disorder? |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
anxietydisorder |
|
anxietydisorderdatedd |
Date |
|
Recommended |
Anxiety Disorder Date |
|
|
|
Query
|
anxietydisorderongoing |
String |
5
|
Recommended |
Anxiety Disorder Ongoing |
Yes; No
|
|
|
Query
|
rev_pulaspiration |
String |
50
|
Recommended |
Aspiration |
Yes;No;NK
|
NK = Not known
|
aspiration |
|
aspirationdatedd |
Date |
|
Recommended |
Aspiration Date |
|
|
|
Query
|
aspirationongoing |
String |
5
|
Recommended |
Aspiration Ongoing |
Yes; No
|
|
|
Query
|
rev_pulasthma |
String |
50
|
Recommended |
Asthma |
Yes;No;NK
|
NK = Not known
|
asthma |
|
asthmadatedd |
Date |
|
Recommended |
Asthma Date |
|
|
|
Query
|
asthmaongoing |
String |
5
|
Recommended |
Asthma Ongoing |
Yes; No
|
|
|
Query
|
attentiondeficit |
String |
10
|
Recommended |
Attention Deficit |
Yes; No; Unknown; N/A
|
|
|
|
attentiondeficitdatedd |
Date |
|
Recommended |
Attention Deficit Date |
|
|
|
Query
|
attentiondeficitongoing |
String |
5
|
Recommended |
Attention Deficit Ongoing |
Yes; No
|
|
|
Query
|
begunexperiencepuberty |
String |
10
|
Recommended |
Has the child begun to experience or completed puberty |
Yes; No; Unknown; N/A
|
|
haschildbegunexperiencepuberty |
|
pubertydatedd |
Date |
|
Recommended |
Has the child begun to experience or completed puberty Date |
|
|
begunexperiencepubertydatedd, haschildbegunexperiencepuberty2 |
Query
|
pubertyongoing |
String |
5
|
Recommended |
Has the child begun to experience or completed puberty Ongoing |
Yes; No
|
|
begunexperiencepubertyongoing, haschildbegunexperiencepuberty5 |
Query
|
othmem_bipolar |
String |
50
|
Recommended |
Bipolar disorder (Manic/depression) |
Yes;No; NK
|
NK = Not known
|
bipolardisorder |
|
bipolardisorderdatedd |
Date |
|
Recommended |
Bipolar Disorder Manic Depression Date |
|
|
|
Query
|
bipolardisorderongoing |
String |
5
|
Recommended |
Bipolar Disorder Manic Depression Ongoing |
Yes; No
|
|
|
Query
|
rev_skinbirthmark |
String |
50
|
Recommended |
Birthmarks (e.g., cafe-au-lait spots, white spots) |
Yes;No;NK
|
NK = Not known
|
birthmarks |
|
birthmarksdatedd |
Date |
|
Recommended |
Birthmarks Date |
|
|
|
Query
|
birthmarksongoing |
String |
5
|
Recommended |
Birthmarks Ongoing |
Yes; No
|
|
|
Query
|
rev_hembleeddisorder |
String |
50
|
Recommended |
Bleeding disorder |
Yes;No;NK
|
NK = Not known
|
bleed_dis, bleedingdisorder |
|
bleed_disdatedd |
Date |
|
Recommended |
Bleeding disorder Date |
|
|
bleedingdisorderdatedd |
Query
|
bleed_disifye_clinical |
Integer |
|
Recommended |
Bleeding Disorder if yes Clinical |
0;1
|
0=Unchecked box; 1=Checked box
|
bleedingdisorderifye_clinical |
Query
|
bleed_disifye_labbased |
Integer |
|
Recommended |
Bleeding Disorder if yes Lab-based |
0;1
|
0=Unchecked box; 1=Checked box
|
bleedingdisorderifye_labbased |
Query
|
bleed_disifye_unknown |
Integer |
|
Recommended |
Bleeding Disorder if yes Unknown |
0;1
|
0=Unchecked box; 1=Checked box
|
bleedingdisorderifye_unknown |
Query
|
bleedingdisorderongoing |
String |
5
|
Recommended |
Bleeding disorder Ongoing |
Yes; No
|
|
|
Query
|
bonecysts |
String |
10
|
Recommended |
Bone cysts |
Yes; No; Unknown; N/A
|
|
|
|
bonecystsdatedd |
Date |
|
Recommended |
Bone cysts Date |
|
|
|
Query
|
bonecystsongoing |
String |
5
|
Recommended |
Bone cysts Ongoing |
Yes; No
|
|
|
Query
|
breast |
String |
35
|
Recommended |
Breast development |
Yes; No; Not applicable; Yes but date of consent unknown
|
|
breastdevelopment |
Query
|
breastageofoneset |
Integer |
|
Recommended |
Breast development age of oneset - years |
|
|
breastdevelopmentageofoneset |
|
breastdateofonesetdd |
Date |
|
Recommended |
Breast development Date of oneset |
|
|
breastdevelopmentdateofonesetd |
Query
|
tsmfemale |
Integer |
|
Recommended |
TSM Female development stage |
1::5; 9; 9998; 9999
|
1 = Prepubertal. No breast tissue; 2 = Areolar enlargement with breast bud; 3 = Enlargement of breast and areola as single mound; 4 = Projection of areola above breast as double mound; 5 = Adult. Papilla projects out of areola that is part of breast contour; 9 = Missing value; 9998 =subject skipped; 9999=not applicable--subject is not female
|
breastdevelopmenttannerstage, breasttannerstage |
|
ctdatedd |
Date |
|
Recommended |
CT date DD |
|
|
ifyesctdatedd |
Query
|
ctscanresult |
Integer |
|
Recommended |
Details of MRI/CT scan result(s) |
1;2;3
|
1 = Normal; 2 = Abnormal; 3 = Unknown
|
ctresults, ifyesctresults |
Query
|
cardio_tsc |
Integer |
|
Recommended |
Cardiovascular - TSC-related cardiac lesions |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
cardiaclesions, cardiaclesionsdefect |
|
cardiaclesionsdatedd |
Date |
|
Recommended |
TSC related cardiac lesions Date |
|
|
|
Query
|
cardiaclesionsongoing |
String |
5
|
Recommended |
TSC related cardiac lesions Ongoing |
Yes; No
|
|
|
Query
|
cardiacdefect |
String |
10
|
Recommended |
Cardiac defect |
Yes; No; Unknown; N/A
|
|
|
|
cardiacdefectdd |
Date |
|
Recommended |
Cardiac defect DD |
|
|
|
Query
|
cardiacdefectongoing |
String |
5
|
Recommended |
Cardiac defect Ongoing |
Yes; No
|
|
|
Query
|
rev_immunocellimmunedef |
String |
50
|
Recommended |
Cell Mediated Immune Def. |
Yes;No;NK
|
NK = Not known
|
cellmed, cellmediatedimmunedeficiency |
|
cellmedda |
Date |
|
Recommended |
Cellmediated immune deficiency Date |
|
|
cellmediatedimmunedeficiencyda, cellmediatedimmunedeficiencyda2 |
Query
|
cellmedon |
String |
5
|
Recommended |
Cellmediated immune deficiency Ongoing |
Yes; No
|
|
cellmediatedimmunedeficiencyon |
Query
|
fhxcp |
String |
5
|
Recommended |
Cerebral Palsy |
Yes;No; NK
|
NK = Not known
|
cerebralpalsy, cerebralpalsy2 |
|
cerebralpalsydatedd |
Date |
|
Recommended |
Cerebral Palsy Date |
|
|
|
Query
|
cerebralpalsyongoing |
String |
5
|
Recommended |
Cerebral Palsy Ongoing |
Yes; No
|
|
|
Query
|
changesincelastvisit |
String |
10
|
Recommended |
Have there been any changes or development of any medical problemsconditions in the following body systems or in the status of genetic testing since the last study visit |
Yes; No; Unknown
|
|
havetherebeenchangessincelastv |
Query
|
chrommicroyear |
Integer |
|
Recommended |
Chromosomal microarray year if known |
|
|
chromosomalmicroarrayyear |
Query
|
chromanalysisyear |
Integer |
|
Recommended |
Chromosome analysis karyotype year if known |
|
|
chromosomeanalysisyear |
Query
|
rev_mouthcleftlip |
String |
50
|
Recommended |
Is there a cleft lip and/or cleft palate? |
Yes;No;NK
|
NK = Not known
|
cleftlip |
|
cleftlipdatedd |
Date |
|
Recommended |
Cleft lip Date |
|
|
|
Query
|
cleftlipongoing |
String |
5
|
Recommended |
Cleft lip Ongoing |
Yes; No
|
|
|
Query
|
rev_mouthcleftpalate |
String |
50
|
Recommended |
Cleft Palate |
Yes;No;NK
|
NK = Not known
|
cleftpalate |
|
cleftpalatedatedd |
Date |
|
Recommended |
Cleft palateDate |
|
|
|
Query
|
cleftpalateongoing |
String |
5
|
Recommended |
Cleft palateOngoing |
Yes; No
|
|
|
Query
|
colonpolyps |
String |
10
|
Recommended |
Colon polyps |
Yes; No; Unknown; N/A
|
|
|
|
colonpolypsdd |
Date |
|
Recommended |
Colon polyps DD |
|
|
|
Query
|
colonpolypsongoing |
String |
5
|
Recommended |
Colon polyps Ongoing |
Yes; No
|
|
|
Query
|
colonpolypsspecify |
String |
50
|
Recommended |
Colon polyps a If yes specify number and type |
|
|
|
Query
|
gastro_constipation |
String |
50
|
Recommended |
Does subject have issue of constipation? |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
constipation |
|
constipationdatedd |
Date |
|
Recommended |
Constipation Date |
|
|
|
Query
|
constipationongoing |
String |
5
|
Recommended |
Constipation Ongoing |
Yes; No
|
|
|
Query
|
rev_cardiocyanosis |
String |
50
|
Recommended |
Cyanosis |
Yes;No;NK
|
NK = Not known
|
cyanosis |
|
cyanosisdatedd |
Date |
|
Recommended |
Cyanosis Date |
|
|
|
Query
|
cyanosisongoing |
String |
5
|
Recommended |
Cyanosis Ongoing |
Yes; No
|
|
|
|
dtapdatedd |
Date |
|
Recommended |
Immunizations up to date DTap Date |
|
|
immunizationsuptodatedtapdated |
Query
|
hear_loss |
String |
10
|
Recommended |
Deafness or significant hearing loss |
Yes;No;NK
|
NK = Not known
|
deafness |
|
deafnessdatedd |
Date |
|
Recommended |
Deafnesssignificant hearing loss Date |
|
|
|
Query
|
deafnessongoing |
String |
5
|
Recommended |
Deafnesssignificant hearing loss Ongoing |
Yes; No
|
|
|
Query
|
rev_teethdentalab |
String |
50
|
Recommended |
Dental abnormalities |
Yes;No;NK
|
NK = Not known
|
den_ab, dentalabnormalities |
|
wk_dental_date |
Date |
|
Recommended |
Dental. Date |
|
|
den_abdatedd, dentalabnormalitiesdatedd |
Query
|
den_abifyesspecif |
String |
100
|
Recommended |
Dental abnormalities If yes specify |
|
|
dentalabnormalitiesifyesspecif |
Query
|
den_abongoing |
String |
5
|
Recommended |
Dental Abnormalities Ongoing |
Yes; No
|
|
dentalabnormalitiesongoing |
Query
|
othmem_depression |
String |
50
|
Recommended |
Depression |
Yes;No; NK
|
NK = Not known
|
depression |
|
depressiondatedd |
Date |
|
Recommended |
Depression Date |
|
|
|
Query
|
depressionongoing |
String |
5
|
Recommended |
Depression Ongoing |
Yes; No
|
|
|
Query
|
dev_oral |
String |
10
|
Recommended |
Development of oral conditions |
Yes; No; Unknown
|
|
developmentoralconditions |
|
dev_oralspe |
String |
250
|
Recommended |
Development of oral conditions specify |
|
|
developmentoforalconditionsspe, oralcondspecify |
Query
|
rev_endodiabetes |
String |
50
|
Recommended |
Diabetes |
Yes;No;NK
|
NK = Not known
|
diabetes |
|
diabetesdatedd |
Date |
|
Recommended |
Diabetes Date |
|
|
|
Query
|
diabetesifyestype |
String |
15
|
Recommended |
Diabetes G40a If yes type |
Type I; Type II; Unknown
|
|
|
Query
|
diabetesongoing |
String |
5
|
Recommended |
Diabetes Ongoing |
Yes; No
|
|
|
Query
|
dia_loose |
String |
10
|
Recommended |
Diarrhea loose stools |
Yes; No; Unknown; N/A
|
|
diarrhealoosestools |
|
dia_loosedatedd |
Date |
|
Recommended |
Diarrhea loose stools Date |
|
|
diarrhealoosestoolsdatedd |
Query
|
dia_looseongoing |
String |
5
|
Recommended |
Diarrhea loose stools Ongoing |
Yes; No
|
|
diarrhealoosestoolsongoing |
Query
|
sleep_pat |
String |
10
|
Recommended |
Disrupted sleep patterns |
Yes;No;NK
|
NK = Not known
|
disruptedsleeppatterns |
|
sleep_patdatedd |
Date |
|
Recommended |
Disrupted sleep patterns Date |
|
|
disruptedsleeppatternsdatedd |
Query
|
sleep_patongoing |
String |
5
|
Recommended |
Disrupted sleep patterns Ongoing |
Yes; No
|
|
disruptedsleeppatternsongoing |
Query
|
dysphagia_sd |
String |
10
|
Recommended |
Dysphagia swallowing difficult |
Yes; No; Unknown; N/A
|
|
dysphagiaswallowingdifficult |
|
dysphagia_sdda |
Date |
|
Recommended |
Dysphagia swallowing difficult Date |
|
|
dysphagiaswallowingdifficultda |
Query
|
dysphagia_sdon |
String |
5
|
Recommended |
Dysphagia swallowing difficult Ongoing |
Yes; No
|
|
dysphagiaswallowingdifficulton |
Query
|
child_eatingdis |
String |
50
|
Recommended |
Does (did) the Child have an Eating Disorder? |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
eatingdisorder |
|
eatingdisorderdatedd |
Date |
|
Recommended |
Eating Disorder Date |
|
|
|
Query
|
eatingdisorderongoing |
String |
5
|
Recommended |
Eating Disorder Ongoing |
Yes; No
|
|
|
Query
|
child_eatingdis_cmt |
String |
255
|
Recommended |
Specify Child's Eating Disorder |
|
|
eatingdisordertype |
Query
|
rev_skineczema |
String |
50
|
Recommended |
Eczema |
Yes;No;NK
|
NK = Not known
|
eczema |
|
eczemadatedd |
Date |
|
Recommended |
Eczema Date |
|
|
|
Query
|
eczemaongoing |
String |
5
|
Recommended |
Eczema Ongoing |
Yes; No
|
|
|
Query
|
rev_headencephalitis |
String |
50
|
Recommended |
Encephalitis |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
encephalitis |
|
encephalitisdatedd |
Date |
|
Recommended |
Encephalitis Date DD |
|
|
|
|
encephalitisifyestype |
String |
25
|
Recommended |
Encephalitis If yes type of organism |
|
|
|
Query
|
encephalitisongoing |
String |
5
|
Recommended |
Encephalitis Ongoing |
Yes; No
|
|
|
Query
|
rev_immunoenvallergy |
String |
50
|
Recommended |
Environmental Allergies |
Yes;No;NK
|
NK = Not known
|
env_allergy, environmentalallergies |
|
env_allergydatedd |
Date |
|
Recommended |
Environmental allergies Date |
|
|
environmentalallergiesdatedd |
|
rev_immunoenvallergytype |
String |
255
|
Recommended |
Environmental Allergies: Type |
|
|
environmentalallergiesifyes |
Query
|
env_allergyongoing |
String |
5
|
Recommended |
Environmental allergies Ongoing |
Yes; No
|
|
environmentalallergiesongoing |
Query
|
fishyear |
Integer |
|
Recommended |
FISH year if known |
|
|
|
Query
|
rev_headfebseiz |
String |
50
|
Recommended |
Febrile Seizures |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
febrileseizures |
Query
|
febseiz_eeg |
Integer |
|
Recommended |
Head/Brain - Febrile Seizures - EEG done? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
febrileseizuresifyeseegdone |
|
febrileseizuresifyeseegdonedat |
Date |
|
Recommended |
Febrile Seizures - If yes was EEG done date |
|
|
|
Query
|
febrileseizuresifyeseegdoneres |
String |
50
|
Recommended |
Febrile Seizures - If yes was EEG done - If yes results |
Normal; Abnormal; Unknown
|
|
|
Query
|
gtm_chromosomal |
Integer |
|
Recommended |
Genetic testing method: Chromosomal microarray |
0;1
|
0=Unchecked box; 1=Checked box
|
genetictestingmethod_chromosomal, genetictestingresult_chromosomal |
Query
|
gtm_chromosomea |
Integer |
|
Recommended |
Genetic testing method: Chromosome analysis (karyotype) |
0;1
|
0=Unchecked box; 1=Checked box
|
genetictestingmethod_chromosomea, genetictestingresult_chromosomea |
Query
|
gtm_fish |
Integer |
|
Recommended |
Genetic testing method: FISH |
0;1
|
0=Unchecked box; 1=Checked box
|
genetictestingmethod_fish, genetictestingresult_fish |
Query
|
gtm_otherplease |
Integer |
|
Recommended |
Genetic testing method: Other, please specify |
0;1
|
0=Unchecked box; 1=Checked box
|
genetictestingmethod_otherplease, genetictestingresult_otherplease |
Query
|
gtm_sangerornex |
Integer |
|
Recommended |
Genetic testing method: Sanger or next-generation sequencing |
0;1
|
0=Unchecked box; 1=Checked box
|
genetictestingmethod_sangerornex, genetictestingresult_sangerornex |
Query
|
gtm_singlegenet |
Integer |
|
Recommended |
Genetic testing method: Single gene testing |
0;1
|
0=Unchecked box; 1=Checked box
|
genetictestingmethod_singlegenet, genetictestingresult_singlegenet |
Query
|
genetic_test_notes |
String |
255
|
Recommended |
note regarding genetic tests |
|
|
genetictestingmethodotherspeci |
|
genetictestingresultsdd |
Date |
|
Recommended |
Genetic testing results known If yes date of testing |
|
|
|
|
genetic_test_otr |
String |
50
|
Recommended |
Genetic testing Other please specify |
|
|
|
Query
|
gentest_tsc |
Integer |
|
Recommended |
Genetics - Genetic testing results known? |
1 :: 3
|
1 = Yes; 2 = No; 3 = Never tested
|
genetictestingresultsknown |
|
hpvdatedd |
Date |
|
Recommended |
Immunizations up to date HPV Date |
|
|
immunizationsuptodatehpvdatedd |
Query
|
hashimoto |
String |
200
|
Recommended |
If yes Hashimoto |
Yes; N/A; No; NK
|
|
|
|
hashimotoonsetdd |
Date |
|
Recommended |
If yes Hashimoto Date |
|
|
|
Query
|
hist_trauma |
String |
10
|
Recommended |
History of head trauma |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
headtrauma, historyheadtrauma |
|
headtraumadatedd |
Date |
|
Recommended |
History of head trauma Date |
|
|
historyheadtraumadatedd |
Query
|
headtraumaifyesimaging |
String |
5
|
Recommended |
If Head trauma were imaging studies done |
Yes; No
|
|
historyheadtraumaifyesimaging |
|
headtraumaifyesimagingdatedd |
Date |
|
Recommended |
If head trauma were imaging studies done Date |
|
|
historyheadtraumaifyesimagingd |
Query
|
headtraumaimagingify_ct |
Integer |
|
Recommended |
HeadTraumaImagingIfY: CT |
0;1
|
0=Unchecked box; 1=Checked box
|
|
Query
|
headtraumaimagingify_mri |
Integer |
|
Recommended |
HeadTraumaImagingIfY: MRI |
0;1
|
0=Unchecked box; 1=Checked box
|
|
Query
|
headtraumaimagingify_pet |
Integer |
|
Recommended |
HeadTraumaImagingIfY: PET |
0;1
|
0=Unchecked box; 1=Checked box
|
|
Query
|
headtraumaimagingify_us |
Integer |
|
Recommended |
HeadTraumaImagingIfY: US |
0;1
|
0=Unchecked box; 1=Checked box
|
|
Query
|
headtraumalostconsciousness |
String |
5
|
Recommended |
Head trauma loss of consciousness |
Yes; No; NK
|
|
ifyeslossofconciousness |
Query
|
headtraumaongoing |
String |
5
|
Recommended |
History of head trauma Ongoing |
Yes; No
|
|
historyheadtraumaongoing |
Query
|
rev_eartest |
String |
50
|
Recommended |
Hearing Testing: |
Yes;No;NK
|
NK = Not known
|
hearingtesting |
|
hearingtestingdatedd |
Date |
|
Recommended |
Hearing testing Date |
|
|
|
Query
|
rev_eartestresult |
String |
50
|
Recommended |
Hearing Testing: Result |
Normal;Abnormal;Unknown
|
|
hearingtestingifyesresult |
Query
|
hearingtestingongoing |
String |
5
|
Recommended |
Hearing testing Ongoing |
Yes; No
|
|
|
|
hepatitisadatedd |
Date |
|
Recommended |
Immunizations up to date Hepatitis A Date |
|
|
immunizationsuptodatehepatitis3 |
|
hepatitisbdatedd |
Date |
|
Recommended |
Immunizations up to date Hepatitis B Date |
|
|
immunizationsuptodatehepatitis |
Query
|
rev_endohyperthyroidism |
String |
50
|
Recommended |
Hyperthyroidism |
Yes;No;NK
|
NK = Not known
|
hyperthyroidism |
|
hyperthyroidismdatedd |
Date |
|
Recommended |
Hyperthyroidism Date |
|
|
|
Query
|
hyperthyroidismongoing |
String |
5
|
Recommended |
Hyperthyroidism Ongoing |
Yes; No
|
|
|
Query
|
rev_endohypoglycemia |
String |
50
|
Recommended |
Hypoglycemia |
Yes;No;NK
|
NK = Not known
|
hypoglycemia |
|
hypoglycemiadatedd |
Date |
|
Recommended |
Hypoglycemia Date |
|
|
|
Query
|
hypoglycemiaongoing |
String |
5
|
Recommended |
Hypoglycemia Ongoing |
Yes; No
|
|
|
Query
|
rev_endohypothyroidism |
String |
50
|
Recommended |
Hypothyroidism |
Yes;No;NK
|
NK = Not known
|
hypothyroidism |
|
hypothyroidismdatedd |
Date |
|
Recommended |
Hypothyroidism Date |
|
|
|
Query
|
hypothyroidismongoing |
String |
5
|
Recommended |
Hypothyroidism Ongoing |
Yes; No
|
|
|
Query
|
brain_mri_corttub |
Integer |
|
Recommended |
Head/Brain - Brain MRI - Cortical tuber |
0; 1
|
0 = No; 1 = Yes
|
follow_mri_corticaltub, ifyesmriwerefollowin_corticaltub |
Query
|
brain_mri_subnod |
Integer |
|
Recommended |
Head/Brain - Brain MRI - Subependymal Nodule |
0; 1
|
0 = No; 1 = Yes
|
follow_mri_subependym1, ifyesmriwerefollowin_subependym1 |
Query
|
brain_mri_astroc |
Integer |
|
Recommended |
Head/Brain - Brain MRI - Subependymal giant cell - Astrocytoma |
0; 1
|
0 = No; 1 = Yes
|
follow_mri_subependym2, ifyesmriwerefollowin_subependym2 |
|
ipvdatedd |
Date |
|
Recommended |
Immunizations up to date IPV Date |
|
|
immunizationsuptodateipvdatedd |
|
ifyeshearingcorrecteddatedd |
Date |
|
Recommended |
If yes was hearing corrected with hearing aids or cochlear implants If yes date corrected DD |
|
|
|
Query
|
ifyeswashearingcorrected |
String |
5
|
Recommended |
If yes was hearing corrected with hearing aids or cochlear implants |
Yes; No
|
|
|
Query
|
immundtap |
Integer |
|
Recommended |
Immunologic - Immunizations up to date - Dtap |
0; 1
|
0 = No; 1 = Yes
|
imm_dat_dtap, immunizationsuptodat_dtap |
Query
|
imm_dat_hpv |
Integer |
|
Recommended |
Immunizations Up to Date: HPV |
0;1
|
0=No; 1=Yes
|
immunizationsuptodat_hpv |
Query
|
imm_dat_hepatitisa |
Integer |
|
Recommended |
Immunizations Up to Date: Hepatitis A |
0;1
|
0=Unchecked box; 1=Checked box
|
immunizationsuptodat_hepatitisa |
Query
|
imm_dat_hepatitisb |
Integer |
|
Recommended |
Immunizations Up to Date: Hepatitis B |
0;1
|
0=Unchecked box; 1=Checked box
|
immunizationsuptodat_hepatitisb |
Query
|
imm_dat_ipv |
Integer |
|
Recommended |
Immunizations Up to Date: IPV |
0;1
|
0=Unchecked box; 1=Checked box
|
immunizationsuptodat_ipv |
Query
|
imm_dat_mmr |
Integer |
|
Recommended |
Immunizations Up to Date: MMR |
0;1
|
0=Unchecked box; 1=Checked box
|
immunizationsuptodat_mmr |
Query
|
imm_dat_prevnar |
Integer |
|
Recommended |
Immunizations Up to Date: Prevnar |
0;1
|
0=Unchecked box; 1=Checked box
|
immunizationsuptodat_prevnar |
Query
|
imm_dat_varicella |
Integer |
|
Recommended |
Immunizations Up to Date: Varicella |
0;1
|
0=Unchecked box; 1=Checked box
|
immunizationsuptodat_varicella |
Query
|
imm_date |
String |
10
|
Recommended |
Immunizations up to date |
Yes; No; Unknown; N/A
|
|
immunizationsuptodate |
Query
|
imm_dateongoing |
String |
5
|
Recommended |
Immunizations up to date Ongoing |
Yes; No
|
|
immunizationsuptodateongoing |
Query
|
immunoglobiniggdeficiency |
String |
10
|
Recommended |
Immunoglobin IgG deficiency |
Yes; No; Unknown; N/A
|
|
|
|
immunoglobiniggdeficiencydated |
Date |
|
Recommended |
Immunoglobin IgG deficiency Date DD |
|
|
|
Query
|
immunoglobiniggdeficiencyongoi |
String |
5
|
Recommended |
Immunoglobin IgG deficiency Ongoing |
Yes; No
|
|
|
Query
|
influenzavaccine |
String |
10
|
Recommended |
Influenza vaccine this year |
Yes; No; Unknown; N/A
|
|
|
|
influenzavaccinedatedd |
Date |
|
Recommended |
Influenza vaccine Date |
|
|
|
Query
|
influenzavaccineongoing |
String |
5
|
Recommended |
Influenza vaccine Ongoing |
Yes; No
|
|
|
Query
|
rev_pullungmalfunc |
String |
50
|
Recommended |
Lung Malformations |
Yes;No;NK;NA
|
NK = Not known
|
lungmalformations |
|
lungmalformationsdatedd |
Date |
|
Recommended |
Lung malformations Date |
|
|
|
Query
|
lungmalformationsongoing |
String |
5
|
Recommended |
Lung malformations Ongoing |
Yes; No
|
|
|
|
mmrdatedd |
Date |
|
Recommended |
Immunizations up to date MMR Date |
|
|
immunizationsuptodatemmrdatedd |
|
wk_mri_date |
Date |
|
Recommended |
MRI. Date |
|
|
mridatedd |
Query
|
mriscanresults |
Integer |
|
Recommended |
Details of the brain MRI result(s) |
1;2;3
|
1 = Normal; 2 = Abnormal; 3 = Unknown
|
mriresults |
Query
|
rev_immunomedallergy |
String |
50
|
Recommended |
Medication Allergies |
Yes;No;NK;NA
|
NK = Not known; NA=Not Applicable
|
medicationallergies |
|
medicationallergiesdatedd |
Date |
|
Recommended |
Medication allergies Date |
|
|
|
Query
|
rev_immunomedallergymed |
String |
255
|
Recommended |
Medication Allergies: Medications |
|
|
medicationallergiesifyes |
Query
|
medicationallergiesongoing |
String |
5
|
Recommended |
Medication allergies Ongoing |
Yes; No
|
|
|
Query
|
rev_headmeningitis |
String |
50
|
Recommended |
Meningitis |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
meningitis |
|
meningitisdatedd |
Date |
|
Recommended |
Meningitis Date |
|
|
|
|
rev_headmeningitisorg |
String |
255
|
Recommended |
Meningitis: Organism |
|
|
meningitisifyestype |
Query
|
meningitisongoing |
String |
5
|
Recommended |
Meningitis Ongoing |
Yes; No
|
|
|
Query
|
menstruation |
String |
35
|
Recommended |
Menstruation |
Yes; No; Not applicable; Yes but date of consent unknown
|
|
|
Query
|
menstruationageofonset |
Integer |
|
Recommended |
Menstruation Age Of Onset |
|
|
|
|
menstruationdateofonsetdd |
Date |
|
Recommended |
Menstruation Date Of Onset |
|
|
|
Query
|
rev_teethneonatal |
String |
50
|
Recommended |
Neonatal Teeth |
Yes;No;NK
|
NK = Not known
|
neonatalteeth |
|
neonatalteethdatedd |
Date |
|
Recommended |
Neonatal Teeth Date |
|
|
|
Query
|
neonatalteethongoing |
String |
5
|
Recommended |
Neonatal Teeth Ongoing |
Yes; No
|
|
|
Query
|
nonrenalhamartoma |
String |
10
|
Recommended |
Nonrenal hamartoma |
Yes; No; Unknown; N/A
|
|
|
|
nonrenalhamartomadatedd |
Date |
|
Recommended |
Nonrenal hamartoma Date |
|
|
|
Query
|
nonrenalhamartomaongoing |
String |
5
|
Recommended |
Nonrenal hamartoma Ongoing |
Yes; No
|
|
|
Query
|
rev_endoobesity |
String |
50
|
Recommended |
Obesity |
Yes;No;NK
|
NK = Not known
|
obesity |
|
obesitydatedd |
Date |
|
Recommended |
Obesity Date |
|
|
|
Query
|
obesityongoing |
String |
5
|
Recommended |
Obesity Ongoing |
Yes; No
|
|
|
Query
|
child_ocd |
String |
50
|
Recommended |
Does (did) the Child have Obsessive Compulsive Disorder? |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
obsessivecompulsivedisorder |
|
ocddat |
Date |
|
Recommended |
ObsessiveCompulsive Disorder Date |
|
|
obsessivecompulsivedisorderdat |
|
ocddat2 |
Date |
|
Recommended |
ObsessiveCompulsive Disorder Date 2 |
|
|
obsessivecompulsivedisorderdat2 |
Query
|
ocdong |
String |
5
|
Recommended |
ObsessiveCompulsive Disorder Ongoing |
Yes; No
|
|
obsessivecompulsivedisorderong |
Query
|
otherabnor |
String |
10
|
Recommended |
Otherabnormality |
Yes; No; Unknown; N/A
|
|
|
Query
|
otr_ren_ab_abnormalbp |
Integer |
|
Recommended |
Other Renal Abnormality: Abnormal BP |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_abnormalbp |
Query
|
otr_ren_ab_agenesis |
Integer |
|
Recommended |
Other Renal Abnormality: Agenesis |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_agenesis |
Query
|
otr_ren_ab_hydronephro |
Integer |
|
Recommended |
Other Renal Abnormality: Hydronephrosis |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_hydronephro |
Query
|
otr_ren_ab_hypoplasia |
Integer |
|
Recommended |
Other Renal Abnormality: Hypoplasia |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_hypoplasia |
Query
|
otr_ren_ab_other |
Integer |
|
Recommended |
Other Renal Abnormality: Other |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_other |
Query
|
otr_ren_ab_renalcellca |
Integer |
|
Recommended |
Other Renal Abnormality: Renal cell carcinoma |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_renalcellca |
Query
|
otr_ren_ab_uti |
Integer |
|
Recommended |
Other Renal Abnormality: UTI |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_uti |
Query
|
otr_ren_ab_vur |
Integer |
|
Recommended |
Other Renal Abnormality: VUR |
0;1
|
0=Unchecked box; 1=Checked box
|
otherrenalabnormalit_vur |
|
othertscdatedd |
Date |
|
Recommended |
Other TSC Date |
|
|
|
Query
|
othertscongoing |
String |
5
|
Recommended |
Other TSC Ongoing |
Yes; No
|
|
|
Query
|
other_tsc4 |
String |
255
|
Recommended |
Other TSC-Related Conditions - Other - Specify |
|
|
othertscspecify |
Query
|
rev_earrecuotitis |
String |
50
|
Recommended |
Recurrent Otitis Media |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
ottismedia, recurrentottismedia |
|
ottismediadatedd |
Date |
|
Recommended |
Recurrent Otitis Media OM Date DD |
|
|
recurrentottismediadatedd |
Query
|
ottismedianumber |
Integer |
|
Recommended |
If Recurrent otitis number |
|
|
recurrentottismediaifyesnumber |
Query
|
ottismedianumbersincelastvisit |
Integer |
|
Recommended |
If Recurrent otitis number since last visit |
|
|
|
Query
|
ottismediaongoing |
String |
5
|
Recommended |
Recurrent Otitis Media OM Ongoing |
Yes; No
|
|
recurrentottismediaongoing |
Query
|
rev_earrecuotitisyear |
Integer |
|
Recommended |
Recurrent Otitis Media: #Year |
|
|
ottismediayear, recurrentottismediaifyesyear |
Query
|
rev_earpetube |
String |
50
|
Recommended |
PE Tubes |
Yes;No;NK
|
NK = Not known
|
peeartubes |
|
peeartubesdatedd |
Date |
|
Recommended |
PE ear tubes Date |
|
|
|
Query
|
peeartubesongoing |
String |
5
|
Recommended |
PE ear tubes Ongoing |
Yes; No
|
|
|
|
petdd |
Date |
|
Recommended |
PET date |
|
|
ifyespetdd |
Query
|
petres |
Integer |
|
Recommended |
Results: PET scan |
1::3
|
1=Normal; 2=Abnormal; 3= Not Sure
|
ifyespetresults, petresults |
Query
|
ptenresults_altecsr |
Integer |
|
Recommended |
PTEN results: Alteration in other CS-relevant gene (e.g., SDH) |
0;1
|
0=Unchecked box; 1=Checked box
|
ptenresults_alterationinothercsr |
Query
|
ptenresults_knowndiseasecaus |
Integer |
|
Recommended |
PTEN results: PTEN, known disease causing |
0;1
|
0=Unchecked box; 1=Checked box
|
ptenresults_ptenknowndiseasecaus |
Query
|
ptenresults_uncertainsignifi |
Integer |
|
Recommended |
PTEN results: PTEN, uncertain significance |
0;1
|
0=Unchecked box; 1=Checked box
|
ptenresults_ptenuncertainsignifi |
Query
|
ptenskinmanifestatio_other |
Integer |
|
Recommended |
PTENskinmanifestatio: Other |
0;1
|
0=Unchecked box; 1=Checked box
|
|
Query
|
ptenskinman_paollomatou |
Integer |
|
Recommended |
PTENskinmanifestatio: Paollomatous papules |
0;1
|
0=Unchecked box; 1=Checked box
|
ptenskinmanifestatio_paollomatou |
Query
|
ptenskinman_trichilemom |
Integer |
|
Recommended |
PTENskinmanifestatio: Trichilemommas |
0;1
|
0=Unchecked box; 1=Checked box
|
ptenskinmanifestatio_trichilemom |
Query
|
ptenskinmanifestations |
String |
10
|
Recommended |
PTEN skin manifestations |
Yes; No; Unknown; N/A
|
|
|
Query
|
ptenskinmanifestationsongoing |
String |
5
|
Recommended |
PTEN skin manifestations Ongoing |
Yes; No
|
|
|
Query
|
ptenskinmanifestationsother |
String |
250
|
Recommended |
PTEN skin manifestations a If yes check all that apply Other Specify |
|
|
ptenskinmanifestationsspecify |
|
prevnardatedd |
Date |
|
Recommended |
Immunizations up to date Prevnar Date |
|
|
immunizationsuptodateprevnarda |
Query
|
pubichair |
String |
35
|
Recommended |
Pubic hair development |
Yes; No; Not applicable; Yes but date of consent unknown
|
|
pubichairdevelopment |
Query
|
pubichairageatoneset |
Integer |
|
Recommended |
Pubic hair development Age at oneset |
|
|
pubichairdevelopmentageatonese |
|
pubichairdateatonesetdd |
Date |
|
Recommended |
Pubic hair development Date at onesetDD |
|
|
pubichairdevelopmentdateatones |
Query
|
tsftphg |
Integer |
|
Recommended |
Developmental pictures: Teenager's rating of Pubic Hair Growth |
1::5;99
|
For Males: 1 = There is no pubic hair at all. 2 = There is a little soft, long, lightly colored hair 3 = The hair is darker in this stage. It is more curled 4 = The hair is now as dark and curly as that of an adult man 5 = The hair has spread out to the legs For Females: 1 = There is no pubic hair. 2 = There is a little long, lightly colored hair 3 = The hair is darker in this stage. It is coarser and more curled 4 = The hair is now as dark, curly, and coarse as that of an adult woman 5 = The hair now is like that of an adult woman; 99 = Refused
|
pubichairdevelopmenttannerstag |
Query
|
rev_immunorecurinfectio |
Integer |
|
Recommended |
73. Recurrent infections (>2 pneumonia or sinus infections/yr, >8 OM /yr, abscesses) |
0;1;-9
|
0=No;1=Yes;-9=Unknown
|
recurrentinfections |
|
recurrentinfectionsdatedd |
Date |
|
Recommended |
Recurrent infections ie 2 pneumonia or sinus infections per year 8 OM per year abscesses Date |
|
|
|
Query
|
recurrentinfectionsongoing |
String |
5
|
Recommended |
Recurrent infections ie 2 pneumonia or sinus infections per year 8 OM per year abscesses Ongoing |
Yes; No; NK
|
|
|
Query
|
rev_gastroreflux |
String |
50
|
Recommended |
Reflux |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
reflux |
|
refluxdatedd |
Date |
|
Recommended |
Reflux Date |
|
|
|
Query
|
refluxongoing |
String |
5
|
Recommended |
Reflux Ongoing |
Yes; No
|
|
|
Query
|
renal_angiom |
Integer |
|
Recommended |
Renal - Renal angiomyolipoma |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
renalangiomyolipoma |
|
renalangiomyolipomadatedd |
Date |
|
Recommended |
Renal angiomyolipoma Date |
|
|
|
Query
|
renalangiomyolipomaongoing |
String |
5
|
Recommended |
Renal angiomyolipoma Ongoing |
Yes; No
|
|
|
Query
|
renal_cyst |
Integer |
|
Recommended |
Renal - Renal cyst |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
renalcyst |
|
renalcystdatedd |
Date |
|
Recommended |
Renal cyst Date |
|
|
|
Query
|
renalcystongoing |
String |
5
|
Recommended |
Renal cyst Ongoing |
Yes; No
|
|
|
|
renalcellcarcinomadd |
Date |
|
Recommended |
Renal cell carcinoma Date |
|
|
|
Query
|
renalcellcarcinomaongoing |
String |
5
|
Recommended |
Renal cell carcinoma Ongoing |
Yes; No
|
|
|
Query
|
renalcellcarcinomaimaging |
String |
25
|
Recommended |
Renal cell carcinoma If yes imaging |
Renal/bladder US; VCUG
|
|
|
Query
|
sangeryear |
Integer |
|
Recommended |
Sanger or nextgeneration sequencing year if known |
|
|
|
Query
|
schizophreniaorotherpsychosis |
String |
10
|
Recommended |
Schizophrenia or other psychosis |
Yes; No; Unknown; N/A
|
|
|
|
schizophreniaorotherpsychosisd |
Date |
|
Recommended |
Schizophrenia or other psychosis Date |
|
|
|
Query
|
schizophreniaorotherpsychosiso |
String |
5
|
Recommended |
Schizophrenia or other psychosis Ongoing |
Yes; No
|
|
|
|
seizuresdatedd |
Date |
|
Recommended |
Seizures Date |
|
|
|
Query
|
seizureshistory |
String |
10
|
Recommended |
Seizures History |
Yes; No; Unknown; N/A
|
|
|
Query
|
strseizuresongoing |
String |
5
|
Recommended |
Seizures, convulsions, epilepsy: Ongoing issue? |
Yes; No;999
|
|
seizuresongoing |
Query
|
seizuresreview |
String |
5
|
Recommended |
Seizures Review |
Yes; No
|
|
|
Query
|
child_selfinj |
String |
50
|
Recommended |
Does (did) the Child have Self-Injuring Behavior? |
Yes;No
|
|
selfinjuringbehavior |
|
selfinjuringbehaviordatedd |
Date |
|
Recommended |
Self injuring behavior Date |
|
|
|
Query
|
selfinjuringbehaviorongoing |
String |
5
|
Recommended |
Self injuring behavior Ongoing |
Yes; No
|
|
|
Query
|
significantvisualloss |
String |
10
|
Recommended |
Significant visual loss or congenital blindness |
Yes; No; Unknown; N/A
|
|
|
|
significantvisuallossdatedd |
Date |
|
Recommended |
Significant visual loss or congenital blindness Date |
|
|
|
Query
|
significantvisuallossongoing |
String |
5
|
Recommended |
Significant visual loss or congenital blindness Ongoing |
Yes; No
|
|
|
Query
|
singlegenetestingyear |
Integer |
|
Recommended |
Single gene testing year if known |
|
|
|
Query
|
skininfectionsabscesses |
String |
10
|
Recommended |
Skin InfectionsAbscesses |
Yes; No; Unknown; N/A
|
|
|
|
skininfectionsabscessesdatedd |
Date |
|
Recommended |
Skin InfectionsAbscesses Date |
|
|
|
Query
|
skininfectionsabscessesongoing |
String |
5
|
Recommended |
Skin InfectionsAbscesses Ongoing |
Yes; No
|
|
|
|
gentest_tsc_det |
String |
600
|
Recommended |
Genetics - Detailed Genetic Test Results |
|
|
geneticsspecify, specifydetailedgenetictestresu |
Query
|
rev_neckspinalab |
String |
50
|
Recommended |
Spinal abnormalities |
Yes;No;NK
|
NK = Not known
|
spinalabnormalities |
|
spinalabnormalitiesdatedd |
Date |
|
Recommended |
Spinal abnormalities Date |
|
|
|
Query
|
spinalabnormalitiesongoing |
String |
5
|
Recommended |
Spinal abnormalities Ongoing |
Yes; No
|
|
|
|
spinalabnormalitiesspecify |
String |
100
|
Recommended |
Spinal abnormalities specify |
|
|
|
Query
|
rev_eyestrabismus |
String |
50
|
Recommended |
Strabismus |
Yes;No;NK
|
NK = Not known
|
strabismus |
Query
|
strabismusongoing |
String |
5
|
Recommended |
Strabismus Ongoing |
Yes; No
|
|
|
Query
|
surgerycomplicationscode1_1 |
String |
100
|
Recommended |
Complications Code |
|
|
|
Query
|
surgerycomplicationssearch1_1 |
String |
200
|
Recommended |
Complications Search |
|
|
surgerycomplications1_1 |
|
surgerydatedd1_1 |
Date |
|
Recommended |
Date surgery 1 |
|
|
|
Query
|
surgeryindicationcode1_1 |
String |
100
|
Recommended |
Indication Code |
|
|
|
|
surgeryindicationsearch1_1 |
String |
200
|
Recommended |
Indication Search |
|
|
surgeryindication1_1 |
Query
|
surgicalhistory |
String |
10
|
Recommended |
Surgical History |
Yes; No; Unknown; N/A
|
|
|
Query
|
surgicalhistoryongoing |
String |
5
|
Recommended |
Surgical History Ongoing |
Yes; No
|
|
|
Query
|
tsccard_multiplerha |
Integer |
|
Recommended |
TSCCardiacLesionsSpe: multiple rhabdomyomas |
0;1
|
0=Unchecked box; 1=Checked box
|
tsccardiaclesionsspe_multiplerha |
Query
|
tsccard_singlerhabd |
Integer |
|
Recommended |
TSCCardiacLesionsSpe: single rhabdomyomas |
0;1
|
0=Unchecked box; 1=Checked box
|
tsccardiaclesionsspe_singlerhabd |
Query
|
tscifyesspecify |
String |
150
|
Recommended |
TSC If yes specify |
|
|
|
Query
|
tscrelatedfindings |
String |
10
|
Recommended |
6 TSC related findings |
Yes; No; Unknown; N/A
|
|
|
|
tscrelatedfindingsdatedd |
Date |
|
Recommended |
TSC related findings Date |
|
|
|
Query
|
tscrelatedfindingsongoing |
String |
5
|
Recommended |
6 TSC related findings Ongoing |
Yes; No
|
|
|
Query
|
tsc1knowndiseasecausi |
Integer |
|
Recommended |
TSCResults: TSC 1, known disease causing |
0;1
|
0=Unchecked box; 1=Checked box
|
tscresults_tsc1knowndiseasecausi |
Query
|
tsc1uncertainsignific |
Integer |
|
Recommended |
TSCResults: TSC 1, uncertain significance |
0;1
|
0=Unchecked box; 1=Checked box
|
tscresults_tsc1uncertainsignific |
Query
|
tsc2knowndiseasecausi |
Integer |
|
Recommended |
TSCResults: TSC 2, known disease causing |
0;1
|
0=Unchecked box; 1=Checked box
|
tscresults_tsc2knowndiseasecausi |
Query
|
tsc2uncertainsignific |
Integer |
|
Recommended |
TSCResults: TSC 2, uncertain significance |
0;1
|
0=Unchecked box; 1=Checked box
|
tscresults_tsc2uncertainsignific |
Query
|
tscskinifotherspecify |
String |
700
|
Recommended |
TSC skin manifestations If other specify |
|
|
|
Query
|
skin_tsc4 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Facial angiofibromas |
0; 1
|
0 = No; 1 = Yes
|
tsc_skinman_facialangio, tscskinmanifestation_facialangio |
Query
|
skin_tsc5 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Forehead plaque |
0; 1
|
0 = No; 1 = Yes
|
tsc_skinman_foreheadpla, tscskinmanifestation_foreheadpla |
Query
|
skin_tsc2 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Hypopigmented macules |
0; 1
|
0 = No; 1 = Yes
|
tsc_skinman_hypopigment, tscskinmanifestation_hypopigment |
Query
|
skin_tsc_other |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Other |
0; 1
|
0 = No; 1 = Yes
|
tscskinmanifestation_other |
Query
|
skin_tsc3 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Shagreen patch |
0; 1
|
0 = No; 1 = Yes
|
tsc_skinman_shagreenpat, tscskinmanifestation_shagreenpat |
Query
|
skin_tsc1 |
Integer |
|
Recommended |
Skin - TSC skin manifestations |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
tsc_skinmans, tscskinmanifestations |
|
tsc_skinmansdd |
Date |
|
Recommended |
TSC skin manifestations Date |
|
|
tscskinmanifestationsdd |
Query
|
tsc_skinmansongoing |
String |
5
|
Recommended |
TSC skin manifestations Ongoing |
Yes; No
|
|
tscskinmanifestationsongoing |
|
tscrelatedcardiaclesionsspecif |
String |
50
|
Recommended |
TSC related cardiac lesions Specify any changes |
|
|
|
Query
|
ticdisorder |
String |
10
|
Recommended |
Tic Disorder eg Tourette |
Yes; No; Unknown; N/A
|
|
|
|
ticdisorderdatedd |
Date |
|
Recommended |
Tic Disorder eg Tourette Date |
|
|
|
Query
|
ticdisorderongoing |
String |
5
|
Recommended |
Tic Disorder eg Tourette Ongoing |
Yes; No
|
|
|
|
typeofsurgerycode1_1 |
String |
100
|
Recommended |
Type of surgery Code |
|
|
snomedresult1_1 |
|
typeofsurgerysearch1_1 |
String |
200
|
Recommended |
Type of surgery search |
|
|
snomedinputcode1_1 |
|
usdatedd |
Date |
|
Recommended |
US date DD |
|
|
ifyesusdatedd |
Query
|
usresults |
String |
50
|
Recommended |
US results |
Normal; Abnormal; Unknown
|
|
ifyesusresults |
|
varicelladatedd |
Date |
|
Recommended |
Immunizations up to date Varicella Date |
|
|
immunizationsuptodatevaricella |
Query
|
corticalwhitematterpathology |
String |
50
|
Recommended |
c If yes to MRI cortical white matter pathology |
Meningioma; Cerebellar dysplastic gangliocytoma
|
|
|
|
thyroidultrasounddd |
Date |
|
Recommended |
If yes was a thyroid ultrasound done DD |
|
|
|
Query
|
wasathyroidultrasounddone |
String |
5
|
Recommended |
If yes was a thyroid ultrasound done |
Yes; N/A; No
|
|
|
|
rev_teethdentalabdesc |
String |
255
|
Recommended |
Dental abnormalities: Describe |
|
|
|
|
surgerycomplicationscode2_1 |
String |
100
|
Recommended |
Complications Code 2 |
|
|
|
|
surgerycomplicationscode3_1 |
String |
100
|
Recommended |
Complications Code 3 |
|
|
|
|
surgerycomplicationscode4_1 |
String |
100
|
Recommended |
Complications Code 4 |
|
|
|
|
surgerycomplicationscode5_1 |
String |
100
|
Recommended |
Complications Code 5 |
|
|
|
|
surgerycomplicationscode6_1 |
String |
100
|
Recommended |
Complications Code 6 |
|
|
|
|
surgerycomplicationscode7_1 |
String |
100
|
Recommended |
Complications Code 7 |
|
|
|
Query
|
surgerycomplicationssearch2_1 |
String |
50
|
Recommended |
Complications Search 2 |
|
|
surgerycomplications2_1 |
Query
|
surgerycomplicationssearch3_1 |
String |
50
|
Recommended |
Complications Search 3 |
|
|
surgerycomplications3_1 |
Query
|
surgerycomplicationssearch4_1 |
String |
50
|
Recommended |
Complications Search 4 |
|
|
surgerycomplications4_1 |
|
surgerycomplicationssearch5_1 |
String |
50
|
Recommended |
Complications Search 5 |
|
|
surgerycomplications5_1 |
|
surgerycomplicationssearch6_1 |
String |
50
|
Recommended |
Complications Search 6 |
|
|
surgerycomplications6_1 |
|
surgerycomplicationssearch7_1 |
String |
50
|
Recommended |
Complications Search 7 |
|
|
|
|
surgerydatedd2_1 |
Date |
|
Recommended |
Surgery Date 2 |
|
|
|
|
surgerydatedd3_1 |
Date |
|
Recommended |
Surgery Date 3 |
|
|
|
|
surgerydatedd4_1 |
Date |
|
Recommended |
Surgery Date 4 |
|
|
|
|
surgerydatedd5_1 |
Date |
|
Recommended |
Surgery Date 5 |
|
|
|
|
surgerydatedd6_1 |
Date |
|
Recommended |
Surgery Date 6 |
|
|
|
|
surgerydatedd7_1 |
Date |
|
Recommended |
Surgery Date 7 |
|
|
|
Query
|
surgeryindicationcode2_1 |
String |
150
|
Recommended |
Indication Code 2 |
|
|
|
Query
|
surgeryindicationcode3_1 |
String |
100
|
Recommended |
Indication Code 3 |
|
|
|
|
surgeryindicationcode4_1 |
String |
100
|
Recommended |
Indication Code 4 |
|
|
|
|
surgeryindicationcode5_1 |
String |
100
|
Recommended |
Indication Code 5 |
|
|
|
|
surgeryindicationcode6_1 |
String |
100
|
Recommended |
Indication Code 6 |
|
|
|
|
surgeryindicationcode7_1 |
String |
100
|
Recommended |
Indication Code 7 |
|
|
|
Query
|
surgeryindicationsearch2_1 |
String |
50
|
Recommended |
Indication Search 2 |
|
|
surgeryindication2_1 |
Query
|
surgeryindicationsearch3_1 |
String |
50
|
Recommended |
Indication Search 3 |
|
|
surgeryindication3_1 |
Query
|
surgeryindicationsearch4_1 |
String |
50
|
Recommended |
Indication Search 4 |
|
|
surgeryindication4_1 |
|
surgeryindicationsearch5_1 |
String |
50
|
Recommended |
Indication Search 5 |
|
|
surgeryindication5_1 |
|
surgeryindicationsearch6_1 |
String |
50
|
Recommended |
Indication Search 6 |
|
|
surgeryindication6_1 |
|
surgeryindicationsearch7_1 |
String |
50
|
Recommended |
Indication Search 7 |
|
|
|
|
typeofsurgerycode2_1 |
String |
100
|
Recommended |
Type of surgery Code 2 |
|
|
snomedresult2_1 |
Query
|
typeofsurgerycode3_1 |
String |
100
|
Recommended |
Type of surgery Code 3 |
|
|
snomedresult3_1 |
Query
|
typeofsurgerycode4_1 |
String |
100
|
Recommended |
Type of surgery Code 4 |
|
|
snomedresult4_1 |
Query
|
typeofsurgerycode5_1 |
String |
100
|
Recommended |
Type of surgery Code 5 |
|
|
snomedresult5_1 |
|
typeofsurgerycode6_1 |
String |
100
|
Recommended |
Type of surgery Code 6 |
|
|
snomedresult6_1 |
|
typeofsurgerycode7_1 |
String |
100
|
Recommended |
Type of surgery Code 7 |
|
|
|
|
typeofsurgerysearch2_1 |
String |
200
|
Recommended |
Type of surgery search 2 |
|
|
snomedinputcode2_1 |
Query
|
typeofsurgerysearch3_1 |
String |
100
|
Recommended |
Type of surgery search 3 |
|
|
snomedinputcode3_1 |
Query
|
typeofsurgerysearch4_1 |
String |
50
|
Recommended |
Type of surgery search 4 |
|
|
snomedinputcode4_1 |
Query
|
typeofsurgerysearch5_1 |
String |
200
|
Recommended |
Type of surgery search 5 |
|
|
snomedinputcode5_1 |
Query
|
typeofsurgerysearch6_1 |
String |
200
|
Recommended |
Type of surgery search 6 |
|
|
snomedinputcode6_1 |
|
typeofsurgerysearch7_1 |
String |
200
|
Recommended |
Type of surgery search 7 |
|
|
|
Query
|
drooling |
String |
5
|
Recommended |
Drooling |
Yes; No; NK
|
|
|
|
droolingdatedd |
Date |
|
Recommended |
Drooling Date |
|
|
|
Query
|
droolingongoing |
String |
5
|
Recommended |
Drooling Ongoing |
Yes; No
|
|
|
Query
|
esophagealmanometryresults |
String |
10
|
Recommended |
Esophageal manometry Results |
Normal; Abnormal; Unknown
|
|
|
Query
|
mri_arachnoidcy |
Integer |
|
Recommended |
MRI results - Arachnoid cysts |
0;1
|
0=No;1=Yes
|
ifyesmriwerefollowin_arachnoidcy |
Query
|
mri_dysmyelinat |
Integer |
|
Recommended |
MRI results - Dysmyelination |
0;1
|
0=No;1=Yes
|
ifyesmriwerefollowin_dysmyelinat |
Query
|
mri_frontalhypo |
Integer |
|
Recommended |
MRI results - Frontal Hypoplasia/Atrophy |
0;1
|
0=No;1=Yes
|
ifyesmriwerefollowin_frontalhypo |
Query
|
mri_morphologic |
Integer |
|
Recommended |
MRI results - Morphological changes in corpus callosum |
0;1
|
0=No;1=Yes
|
ifyesmriwerefollowin_morphologic |
Query
|
mri_other |
Integer |
|
Recommended |
MRI results - Other |
0;1
|
0=No;1=Yes
|
ifyesmriwerefollowin_other |
|
mri_other_specified |
String |
25
|
Recommended |
MRI results - Other SPECIFIED |
|
|
ifyestomriifother |
Query
|
mri_ventriculom |
Integer |
|
Recommended |
MRI results - Ventriculomegaly |
0;1
|
0=No;1=Yes
|
ifyesmriwerefollowin_ventriculom |
|
rev_headimagestudyresult |
String |
255
|
Recommended |
Imaging Studies: Results |
|
Normal; Abnormal
|
imagingstudiesresults |
Query
|
oralmd |
String |
5
|
Recommended |
Oral motor dysfunction |
Yes; No; NK
|
|
oralmotordysfunction |
|
oralmddatedd |
Date |
|
Recommended |
Oral motor dysfunction Date |
|
|
oralmotordysfunctiondatedd |
Query
|
oralmdongoing |
String |
5
|
Recommended |
Oral motor dysfunction Ongoing |
Yes; No
|
|
oralmotordysfunctionongoing |
Query
|
q19_b7_s2 |
String |
100
|
Recommended |
Abnormal Other: Specify |
|
Complete if q19_b7 = 1
|
otherpleasespecify |
Query
|
pica |
String |
35
|
Recommended |
Pica disorder |
Yes; No; Not applicable; Yes but date of consent unknown
|
|
|
|
picadatedd |
Date |
|
Recommended |
Pica disorder Date |
|
|
|
Query
|
picaongoing |
String |
5
|
Recommended |
Pica disorder Ongoing |
Yes; No
|
|
|
Query
|
refluxdiagnosedby |
String |
20
|
Recommended |
Reflux diagnosed by |
Gastroenterologist; Pediatrician; Other; Unknown
|
|
refluxongoingifyesdiagnosedby, reluxdaignosby |
|
refluxdiagnosedbyo |
String |
200
|
Recommended |
Reflux diagnosed by Other |
|
|
refluxongoingifyesdiagnosedbyo, reluxdaignosbyother |
Query
|
refluxte_esophagealm |
Integer |
|
Recommended |
Reflux - Esophageal manometry |
0;1
|
0=No;1=Yes
|
refluxongoingifyeste_esophagealm |
Query
|
refluxte_uppergixray |
Integer |
|
Recommended |
Reflux - Upper GI X-rays |
0;1
|
0=No;1=Yes
|
refluxongoingifyeste_uppergixray |
|
uppergixraysresults |
String |
15
|
Recommended |
Reflux - Upper GI X-rays results |
|
Normal; Abnormal; Unknown
|
|
Query
|
refluxte_uppergiendo |
Integer |
|
Recommended |
Reflux - Upper GI endoscopy |
0;1
|
0=No;1=Yes
|
refluxongoingifyeste_uppergiendo |
|
uppergiendoscopyresults |
String |
15
|
Recommended |
Reflux - Upper GI endoscopy results |
|
Normal; Abnormal; Unknown
|
|
Query
|
refluxte_phprobemoni |
Integer |
|
Recommended |
Reflux - pH probe monitoring |
0;1
|
0=No;1=Yes
|
refluxongoingifyeste_phprobemoni |
|
phprobemonitoringresults |
String |
15
|
Recommended |
Reflux - pH probe monitoring results |
|
Normal; Abnormal; Unknown
|
|
|
cardiac_lesion_type |
String |
25
|
Recommended |
Cardiac lesions defect specified type |
|
|
cardiaclesionsdefectspecifytyp |
|
ptenskinmanifestationsdd |
Date |
|
Recommended |
PTEN skin manifestations DD |
|
|
|
|
strabismusdd |
Date |
|
Recommended |
Strabismus DD |
|
|
strabismusdatedd |
Query
|
medhx_add_adhd_specify |
String |
255
|
Recommended |
If ADD/ADHD, specify: |
|
|
adhdspecify |
Query
|
abnormbreathspecify |
String |
200
|
Recommended |
Abnormal breathing if yes specify |
|
|
|
|
abnormhrspecify |
String |
200
|
Recommended |
Abnormal rhythm or heart rate if yes specify |
|
|
|
|
anemiaspecify |
String |
50
|
Recommended |
Anemia if yes specify |
|
|
|
Query
|
medhx_anxiety_specify |
String |
500
|
Recommended |
If Anxiety Disorder, specify: |
|
|
anxietyspecify |
|
aspirationspecify |
String |
200
|
Recommended |
Aspiration if yes specify |
|
|
|
|
asthmaspecify |
String |
50
|
Recommended |
Asthma if yes specify |
|
|
|
|
hupbipdx |
String |
250
|
Recommended |
Bipolar Disorder problem |
|
|
bipolarspecify |
Query
|
birthmarksspecify |
String |
200
|
Recommended |
Birthmarks if yes specify |
|
|
|
|
bleedingdisorderspecify |
String |
200
|
Recommended |
Bleeding disorder if yes specify |
|
|
|
|
bonecystsspecify |
String |
50
|
Recommended |
Bone cysts if yes specify |
|
|
|
Query
|
breast_cancer |
String |
20
|
Recommended |
Breast Cancer |
Yes;No;Unknown
|
|
breastcancerhistory |
|
breastcancermonth |
Date |
|
Recommended |
Breast cancer date |
|
|
|
Query
|
breastcancerongoing |
String |
3
|
Recommended |
Breast cancer Ongoing |
Yes;No
|
|
|
|
cellimmunedifspecify |
String |
50
|
Recommended |
Cell mediated immune deficiency if yes specify |
|
|
|
|
cerebralpalsyspecify |
String |
50
|
Recommended |
Cerebral Palsy if yes specify |
|
|
|
Query
|
colonpolypshistory |
String |
10
|
Recommended |
Colon polyps History |
Yes;No;Unknown
|
|
|
Query
|
colorectalcancerhistory |
String |
10
|
Recommended |
Colorectal cancer History |
Yes;No;Unknown
|
|
|
|
colorectalcancermonth |
Date |
|
Recommended |
Colorectal cancer date |
|
|
|
Query
|
colorectalcancerongoing |
String |
3
|
Recommended |
Colorectal cancer Ongoing |
Yes;No
|
|
|
Query
|
constipationspecify |
String |
250
|
Recommended |
Constipation if yes specify |
|
|
|
|
cyanosisspecify |
String |
50
|
Recommended |
Cyanosis if yes specify |
|
|
|
|
deafspecify |
String |
100
|
Recommended |
Deafness significant hearing loss if yes specify |
|
|
|
|
depressionspecify |
String |
200
|
Recommended |
Depression if yes specify |
|
|
|
|
diabetesspecify |
String |
50
|
Recommended |
Diabetes if yes specify |
|
|
|
Query
|
diarrheaspecify |
String |
200
|
Recommended |
Diarrhealoose stools if yes specify |
|
|
|
|
disrsleepotherday |
Date |
|
Recommended |
Disrupted Sleep Other Date of Onset |
|
|
|
|
dysphagiaspecify |
String |
150
|
Recommended |
Dysphagia swallowing difficulties if yes specify |
|
|
|
|
emwday |
Date |
|
Recommended |
EMW Date of Onset |
|
|
|
|
eczemaspecify |
String |
200
|
Recommended |
Eczema if yes specify |
|
|
|
Query
|
endometrialcancerhistory |
String |
10
|
Recommended |
Endometrial cancer History |
Yes;No;Unknown
|
|
|
|
endometrialcancermonth |
String |
3
|
Recommended |
Endometrial cancer Month |
|
|
|
Query
|
endometrialcancerongoing |
String |
5
|
Recommended |
Endometrial cancer Ongoing |
Yes;No
|
|
|
Query
|
endometrialcanceryear |
Integer |
|
Recommended |
Endometrial cancer Year |
|
|
|
|
epilepsyday |
Date |
|
Recommended |
Epilepsy Date of Onset |
|
|
|
Query
|
epilepsyhistory |
String |
10
|
Recommended |
Epilepsy History |
Yes;No;Unknown
|
|
|
Query
|
epilepsyongoing |
String |
5
|
Recommended |
Epilepsy Ongoing |
Yes;No
|
|
|
|
epilepsyspecify |
String |
200
|
Recommended |
Epilepsy if yes specify |
|
|
|
Query
|
febrileseizureongoing |
String |
5
|
Recommended |
Febrile Seizures Ongoing |
Yes;No
|
|
|
Query
|
hashimothyroiditishistory |
String |
10
|
Recommended |
Hashimo thyroiditis History |
Yes;No;Unknown
|
|
|
|
hashimothyroiditismonth |
Date |
|
Recommended |
Hashimo thyroiditis date |
|
|
|
Query
|
hashimothyroiditisongoing |
String |
5
|
Recommended |
Hashimo thyroiditis Ongoing |
Yes;No
|
|
|
|
headtraumaspecify |
String |
200
|
Recommended |
History of head trauma if yes specify |
|
|
|
Query
|
hearingtestspecify |
String |
100
|
Recommended |
Hearing testing if yes specify |
|
|
|
|
hyperthyroidismspecify |
String |
50
|
Recommended |
Hyperthyroidism if yes specify |
|
|
|
|
hypoglycemiaspecify |
String |
200
|
Recommended |
Hypoglycemia if yes specify |
|
|
|
|
hypothyroidismspecify |
String |
100
|
Recommended |
Hypothyroidism if yes specify |
|
|
|
|
iggdefspecify |
String |
200
|
Recommended |
Immunoglobin IgG deficiency if yes specify |
|
|
|
Query
|
imaginstudieshistory |
String |
10
|
Recommended |
if yes to head trauma were imaging studies done History |
Yes;No;Unknown
|
|
|
|
immunizationsspecify |
String |
200
|
Recommended |
Immunizations if yes specify |
|
|
|
Query
|
influenzaspecify |
String |
50
|
Recommended |
Influenza vaccine if yes specify |
|
|
|
Query
|
kidney_cancer |
String |
20
|
Recommended |
Kidney Cancer |
Yes;No
|
|
kidneycancerhistory |
|
kidneycancermonth |
Date |
|
Recommended |
Kidney cancer date |
|
|
|
Query
|
kidneycancerongoing |
String |
5
|
Recommended |
Kidney cancer Ongoing |
Yes;No
|
|
|
Query
|
lossofconschist |
String |
5
|
Recommended |
History of head trauma if Yes loss of consciousness History |
Yes;No
|
|
|
|
lungsmalformspecify |
String |
50
|
Recommended |
Lung malformations if yes specify |
|
|
|
|
mripresentother |
String |
50
|
Recommended |
MRI Present Other specify |
|
|
|
|
nonrenalhamartomaspecify |
String |
50
|
Recommended |
Nonrenal hamartoma if yes specify |
|
|
|
Query
|
ocdspecify |
String |
200
|
Recommended |
Obsessive Compulsive Disorder if yes specify |
|
|
|
Query
|
omspecify |
String |
150
|
Recommended |
Reccurrent Otitis Media OM if yes specify |
|
|
|
|
obesityspecify |
String |
50
|
Recommended |
Obesity if yes specify |
|
|
|
Query
|
otherrenalspecify |
String |
100
|
Recommended |
Other renal abnormality if yes specify |
|
|
|
|
pespecify |
String |
200
|
Recommended |
PE ear tubes if yes specify |
|
|
|
Query
|
pubertyspecify |
String |
150
|
Recommended |
Has the particpant begun to experience or completed puberty if yes specify |
|
|
|
Query
|
recurrentinfectspecify |
String |
150
|
Recommended |
Recurrent infections if yes specify |
|
|
|
Query
|
refluxspecify |
String |
200
|
Recommended |
Reflux if yes specify |
|
|
|
|
renalangiospecify |
String |
200
|
Recommended |
Renal angiomyolipoma if yes specify |
|
|
|
|
renalcystspecify |
String |
200
|
Recommended |
Renal cyst if yes specify |
|
|
|
|
smday |
Date |
|
Recommended |
Sleep Maintenance Date of Onset |
|
|
|
|
soday |
Date |
|
Recommended |
Sleep Onset Date of Onset |
|
|
|
|
schizospecify |
String |
50
|
Recommended |
Schizophrenia or other psychosis if yes specify |
|
|
|
Query
|
seizuresspecify |
String |
300
|
Recommended |
Seizures if yes specify |
|
|
|
Query
|
selfinjuryspecify |
String |
500
|
Recommended |
Self injuring behavior if yes specify |
|
|
|
|
sigvislossspecify |
String |
100
|
Recommended |
Significant visual loss or congenital blindness if yes specify |
|
|
|
Query
|
skininfectionspecify |
String |
100
|
Recommended |
Skin Infection if yes specify |
|
|
|
Query
|
sleeppatternspecifyother |
String |
100
|
Recommended |
Disrupted sleep patterns if yes please specify Other |
|
|
|
Query
|
spspecify_earlymorning |
Integer |
|
Recommended |
Sleep Pattern Specify: Early morning wakening (EMW) |
0;1
|
0 =unchecked box; 1 =checked box
|
sleeppatternspecify_earlymorning |
Query
|
sleeppatternspecify_other |
Integer |
|
Recommended |
Sleep Pattern Specify: Other |
0;1
|
0 =unchecked box; 1 =checked box
|
|
Query
|
spspecify_sleepmainten |
Integer |
|
Recommended |
Sleep Pattern Specify: Sleep maintenance (SM) |
0;1
|
0 =unchecked box; 1 =checked box
|
sleeppatternspecify_sleepmainten |
Query
|
spspecify_sleeponsetso |
Integer |
|
Recommended |
Sleep Pattern Specify: Sleep onset (SO) |
0;1
|
0 =unchecked box; 1 =checked box
|
sleeppatternspecify_sleeponsetso |
|
strabismusspecify |
String |
200
|
Recommended |
Strabismus if yes specify |
|
|
|
|
tscskinspecify |
String |
500
|
Recommended |
TSC skin manifestation if yes specify |
|
|
|
Query
|
thyroid_cancer |
String |
20
|
Recommended |
Thyroid Cancer |
Yes;No;999
|
999=NA/missing
|
thyroidcancerhistory |
|
thyroidcancerhistorymonth |
String |
3
|
Recommended |
Thyroid cancer History Month |
|
|
|
Query
|
thyroidcancerhistoryongoing |
String |
5
|
Recommended |
Thyroid cancer History Ongoing |
Yes;No
|
|
|
|
thyroidcancerhistoryyear |
Date |
|
Recommended |
Thyroid cancer History date |
|
|
|
Query
|
tic_symptoms_specify |
String |
400
|
Recommended |
Tic Disorder: If yes, specify symptoms |
|
|
ticspecify |
|
cardiaclesionstype |
String |
200
|
Recommended |
|
|
|
yesspecifycardiaclesionstype |