|
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 |
|
|
|
|
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
|
diag_changes |
Integer |
|
Recommended |
Changes in diagnostic history since last visit? |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
age_concern |
Integer |
|
Recommended |
Age of first developmental concern (months) |
0 :: 1200
|
|
|
Query
|
concern_speech |
Integer |
|
Recommended |
First concerns related to diagnosis - Speech delay |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
concern_repbeh |
Integer |
|
Recommended |
First concerns related to diagnosis - Repetitive behaviors |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
concern_socdif |
Integer |
|
Recommended |
First concerns related to diagnosis - Social difficulty |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
concern_motdel |
Integer |
|
Recommended |
First concerns related to diagnosis - Motor delay |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
concern_learndis |
Integer |
|
Required |
First concerns related to diagnosis - Learning disabilities |
0; 1;999
|
0 = No; 1 = Yes
|
|
Query
|
concern_other |
Integer |
|
Recommended |
First concerns related to diagnosis - Other |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
aut_diag_new |
Integer |
|
Required |
Autism related diagnosis by physician or other professional since last visit? |
0; 1;999
|
0 = No; 1 = Yes
|
|
Query
|
child_aspergers |
String |
50
|
Required |
Does the Child have Asperger's Syndrome? |
|
NK= Not known; NS = Not sure
|
|
Query
|
child_pddnos |
String |
50
|
Required |
Does the Child have PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified)? |
|
NK= Not known; NS = Not sure
|
|
Query
|
cfmh_chd_pddnos |
Integer |
|
Required |
Does the child have Autism Spectrum Disorder? |
1;0;999
|
0 = No; 1 = Yes
|
|
Query
|
child_autism |
String |
50
|
Required |
Does the Child have Autism? |
|
NK= Not known; NS = Not sure
|
|
Query
|
aut_diag_other |
Integer |
|
Recommended |
Autism-related diagnosis - Other |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
diag_ageatdiag |
Integer |
|
Recommended |
Age at diagnosis(in months) |
|
|
|
Query
|
diag_diagnosismadeby |
String |
50
|
Recommended |
Diagnosis made by |
Physician;Psychologist;Other; NK
|
NK = Not known
|
|
Query
|
devel_changes |
Integer |
|
Recommended |
Any changes in developmental history since last visit? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
walk10 |
Integer |
|
Recommended |
Walking 10 steps? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
walk10_age |
Integer |
|
Recommended |
Walking 10 steps - age |
0 :: 1200
|
|
|
Query
|
first_words |
Integer |
|
Recommended |
First words? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
ad016 |
Integer |
|
Recommended |
Age of first single words (months) |
|
994 = Milestone not reached; 996 = N/K, but apparently normal; 997 = N/K, but apparently delayed; 998 = N/A; 999 = N/K or not asked
|
|
Query
|
speak3word |
Integer |
|
Recommended |
Speaking 3-word sentences? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
age_3word |
Integer |
|
Recommended |
Age at 3-word sentences (in months) |
|
|
|
Query
|
changes_lang |
Integer |
|
Recommended |
Changes in speech/language since last visit? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
changes_langhow |
Integer |
|
Recommended |
Changes in speech/language - how verbal? |
1 :: 3
|
1 = Verbal; 2 = Minimally verbal; 3 = Non-verbal
|
|
Query
|
diag_learndis |
Integer |
|
Required |
Any new diagnoses of learning disabilities? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
diag_learndis_det |
String |
255
|
Recommended |
New diagnoses of learning disabilities - Specify |
|
|
|
Query
|
othmem_devdelay |
String |
50
|
Recommended |
Developmental Delay |
|
NK = Not known
|
|
Query
|
devdelay_det |
String |
255
|
Recommended |
New diagnoses of developmental delay - Specify |
|
|
|
Query
|
diag_id |
Integer |
|
Recommended |
New diagnoses of intellectual disability/mental retardation? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
diag_iddet |
String |
255
|
Recommended |
New diagnoses of intellectual disability/mental retardation - Specify |
|
|
|
Query
|
changes_treat |
Integer |
|
Recommended |
Any changes in treatment/intervention history? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Not applicable
|
|
Query
|
interv_speech |
Integer |
|
Recommended |
Treatment/Intervention - Speech |
1; 2
|
1 = Yes; 2 = No
|
|
Query
|
interv_speech_age |
Integer |
|
Recommended |
Treatment/Intervention - Speech - Age at start of treatment |
0 :: 1200
|
|
|
Query
|
interv_speech_often |
Integer |
|
Recommended |
Treatment/Intervention - Speech - How Often |
1; 2; 3; 4; 9
|
1 = Daily; 2 = Once weekly; 3 = Multiple times/week; 4 = Monthly; 9 = Unknown
|
|
Query
|
interv_octher |
Integer |
|
Recommended |
Treatment/Intervention - Occupational Therapy |
1; 2
|
1 = Yes; 2 = No
|
|
Query
|
interv_octher_age |
Integer |
|
Recommended |
Treatment/Intervention - Occupational Therapy - Age at start of treatment |
0 :: 1200
|
|
|
Query
|
interv_octher_often |
Integer |
|
Recommended |
Treatment/Intervention - Occupational Therapy - How Often |
1; 2; 3; 4; 9
|
1 = Daily; 2 = Once weekly; 3 = Multiple times/week; 4 = Monthly; 9 = Unknown
|
|
Query
|
interv_physther |
Integer |
|
Recommended |
Treatment/Intervention - Physical Therapy |
1; 2
|
1 = Yes; 2 = No
|
|
Query
|
interv_physther_age |
Integer |
|
Recommended |
Treatment/Intervention - Physical Therapy - Age at start of treatment |
0 :: 1200
|
|
|
Query
|
interv_physther_often |
Integer |
|
Recommended |
Treatment/Intervention - Physical Therapy - How Often |
1; 2; 3; 4; 9
|
1 = Daily; 2 = Once weekly; 3 = Multiple times/week; 4 = Monthly; 9 = Unknown
|
|
Query
|
interv_earlyint |
Integer |
|
Recommended |
Treatment/Intervention - Early Intervention |
1; 2
|
1 = Yes; 2 = No
|
|
Query
|
interv_earlyint_age |
Integer |
|
Recommended |
Treatment/Intervention - Early Intervention - Age at start of treatment |
0 :: 1200
|
|
|
Query
|
interv_earlyint_often |
Integer |
|
Recommended |
Treatment/Intervention - Early Intervention - How Often |
1; 2; 3; 4; 9
|
1 = Daily; 2 = Once weekly; 3 = Multiple times/week; 4 = Monthly; 9 = Unknown
|
|
Query
|
interv_aba |
Integer |
|
Recommended |
Treatment/Intervention - Applied Behavioral Analysis |
1; 2
|
1 = Yes; 2 = No
|
|
Query
|
interv_aba_age |
Integer |
|
Recommended |
Treatment/Intervention - Applied Behavioral Analysis - Age at start of treatment |
0 :: 1200
|
|
|
Query
|
interv_aba_often |
Integer |
|
Recommended |
Treatment/Intervention - Applied Behavioral Analysis - How Often |
1; 2; 3; 4; 9
|
1 = Daily; 2 = Once weekly; 3 = Multiple times/week; 4 = Monthly; 9 = Unknown
|
|
Query
|
interv_other |
Integer |
|
Recommended |
Treatment/Intervention - Other Options |
1; 2
|
1 = Yes; 2 = No
|
|
Query
|
interv_other_age |
Integer |
|
Recommended |
Treatment/Intervention - Other Options - Age at start of treatment |
0 :: 1200
|
|
|
Query
|
interv_other_often |
Integer |
|
Recommended |
Treatment/Intervention - Other Options - How Often |
1; 2; 3; 4; 9
|
1 = Daily; 2 = Once weekly; 3 = Multiple times/week; 4 = Monthly; 9 = Unknown
|
|
Query
|
changes_any |
Integer |
|
Recommended |
Any changes in the history of any medical problems/conditions in the following body systems or in status of genetic testing since last study visit? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
rev_headmeningitis |
String |
50
|
Recommended |
Meningitis |
Yes; No; NK; NS
|
NK= Not known; NS = Not sure
|
|
|
rev_headmeningitisorg |
String |
255
|
Recommended |
Meningitis: Organism |
|
|
|
Query
|
rev_headencephalitis |
String |
50
|
Recommended |
Encephalitis |
|
NK= Not known; NS = Not sure
|
|
|
rev_headencephalitisorg |
String |
255
|
Recommended |
Encephalitis: Organism |
|
|
|
Query
|
rev_headfebseiz |
String |
50
|
Recommended |
Febrile Seizures |
|
NK= Not known; NS = Not sure
|
|
Query
|
febseiz_eeg |
Integer |
|
Recommended |
Head/Brain - Febrile Seizures - EEG done? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
febseiz_eeg_res |
Integer |
|
Recommended |
Head/Brain - Febrile Seizures - EEG results |
1; 2
|
1 = Normal; 2 = Abnormal
|
|
Query
|
nonfebseiz |
Integer |
|
Recommended |
Head/Brain - Non-Febrile Seizures |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
nonfebseiz_eeg |
Integer |
|
Recommended |
Head/Brain - Non-Febrile Seizures - EEG done? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
nonfebseiz_eeg_res |
Integer |
|
Recommended |
Head/Brain - Non-Febrile Seizures - EEG results |
1; 2
|
1 = Normal; 2 = Abnormal
|
|
Query
|
fhxcp |
String |
5
|
Required |
Cerebral Palsy |
|
NK = Not known
|
|
Query
|
hist_trauma |
String |
10
|
Recommended |
History of head trauma |
|
NK= Not known; NS = Not sure
|
|
Query
|
rev_headimagestudy |
String |
50
|
Recommended |
Imaging Studies |
|
NK = Not known
|
|
|
rev_headimagestudytype |
String |
50
|
Recommended |
Imaging Studies: Type |
|
US;CT;MR;PET;EEG; MR; any combinations of these types
|
|
|
rev_headimagestudyresult |
String |
255
|
Recommended |
Imaging Studies: Results |
|
Normal; Abnormal
|
|
Query
|
brain_mri |
Integer |
|
Recommended |
Head/Brain - Brain MRI performed? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
brain_mri_corttub |
Integer |
|
Recommended |
Head/Brain - Brain MRI - Cortical tuber |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
brain_mri_subnod |
Integer |
|
Recommended |
Head/Brain - Brain MRI - Subependymal Nodule |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
brain_mri_astroc |
Integer |
|
Recommended |
Head/Brain - Brain MRI - Subependymal giant cell - Astrocytoma |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
vis_blind |
String |
10
|
Recommended |
Significant visual loss or congenital blindness |
Yes; No; NK
|
NK = Not known
|
|
Query
|
eyes_tsc |
Integer |
|
Recommended |
Eyes - TSC-related findings |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
eyes_tsc_det |
String |
255
|
Recommended |
Eyes - TSC-related findings - Specify |
|
|
|
Query
|
rev_eartest |
String |
50
|
Recommended |
Hearing Testing: |
|
NK = Not known
|
|
Query
|
rev_eartestresult |
String |
50
|
Recommended |
Hearing Testing: Result |
Normal;Abnormal;Unknown
|
|
|
Query
|
hear_loss |
String |
10
|
Required |
Deafness or significant hearing loss |
|
NK = Not known
|
|
Query
|
othmem_hearingcor |
String |
50
|
Recommended |
Hearing corrected? |
|
NK = Not known
|
|
Query
|
rev_earrecuotitis |
String |
50
|
Required |
Recurrent Otitis Media |
|
NK= Not known; NS = Not sure
|
|
Query
|
rev_earrecuotitisyear |
Integer |
|
Recommended |
Recurrent Otitis Media: #Year |
|
|
|
Query
|
rev_earpetube |
String |
50
|
Recommended |
PE Tubes |
|
NK = Not known
|
|
Query
|
rev_mouthcleftlip |
String |
50
|
Recommended |
Is there a cleft lip and/or cleft palate? |
|
NK = Not known
|
|
Query
|
rev_mouthcleftpalate |
String |
50
|
Recommended |
Cleft Palate |
|
NK = Not known
|
|
Query
|
neonat_teeth |
Integer |
|
Recommended |
Teeth - Neonatal teeth |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
rev_teethdentalab |
String |
50
|
Recommended |
Dental abnormalities |
|
NK = Not known
|
|
Query
|
rev_neckspinalab |
String |
50
|
Recommended |
Spinal abnormalities |
|
NK = Not known
|
|
Query
|
rev_skineczema |
String |
50
|
Recommended |
Eczema |
|
NK = Not known
|
|
Query
|
skin_tsc1 |
Integer |
|
Recommended |
Skin - TSC skin manifestations |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
skin_tsc2 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Hypopigmented macules |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
skin_tsc3 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Shagreen patch |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
skin_tsc4 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Facial angiofibromas |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
skin_tsc5 |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Forehead plaque |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
skin_tsc_other |
Integer |
|
Recommended |
Skin - TSC skin manifestations - Other |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
rev_skinabcesses |
String |
50
|
Required |
Skin Infections/Abcesses |
|
NK = Not known
|
|
Query
|
rev_skinbirthmark |
String |
50
|
Recommended |
Birthmarks (e.g., cafe-au-lait spots, white spots) |
|
NK = Not known
|
|
Query
|
rev_pulbreathab |
String |
50
|
Recommended |
Abnormal Breathing |
|
NK = Not known
|
|
Query
|
rev_pulasthma |
String |
50
|
Required |
Asthma |
|
NK = Not known
|
|
Query
|
rev_pullungmalfunc |
String |
50
|
Recommended |
Lung Malformations |
|
NK = Not known
|
|
Query
|
rev_pulaspiration |
String |
50
|
Recommended |
Aspiration |
|
NK = Not known
|
|
Query
|
cardio_tsc |
Integer |
|
Required |
Cardiovascular - TSC-related cardiac lesions |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
cardio_tsc_det |
Integer |
|
Recommended |
Cardiovascular - TSC-related cardiac lesions - Specify |
1; 2
|
1 = Single rhabdomyomas; 2 = Multiple rhabdomyomas
|
|
Query
|
rev_cardiocyanosis |
String |
50
|
Recommended |
Cyanosis |
|
NK = Not known
|
|
Query
|
rev_rythm |
String |
10
|
Recommended |
Abnormal rhythm or heart rate |
Yes;No;NK
|
NK = Not known
|
|
Query
|
rev_gastrodysphagia |
String |
50
|
Recommended |
Dysphagia |
|
NK = Not known
|
|
Query
|
rev_gastroreflux |
String |
50
|
Required |
Reflux |
|
NK= Not known; NS = Not sure
|
|
Query
|
rev_gastroother |
String |
50
|
Recommended |
Other feeding difficulties |
|
NK = Not known
|
|
Query
|
renal_angiom |
Integer |
|
Recommended |
Renal - Renal angiomyolipoma |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
renal_cyst |
Integer |
|
Recommended |
Renal - Renal cyst |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
rev_endoprecocious |
String |
50
|
Recommended |
Precocious Puberty |
|
NK = Not known
|
|
Query
|
rev_endohypothyroidism |
String |
50
|
Required |
Hypothyroidism |
|
NK = Not known
|
|
Query
|
rev_endohyperthyroidism |
String |
50
|
Required |
Hyperthyroidism |
|
NK = Not known
|
|
Query
|
rev_endoobesity |
String |
50
|
Recommended |
Obesity |
|
NK = Not known
|
|
Query
|
rev_endodiabetes |
String |
50
|
Required |
Diabetes |
|
NK = Not known
|
|
Query
|
rev_endodiabetestype |
String |
50
|
Required |
Diabetes: Type |
I;II;NA
|
|
|
Query
|
rev_endohypoglycemia |
String |
50
|
Recommended |
Hypoglycemia |
|
NK = Not known
|
|
Query
|
rev_hemanemia |
String |
50
|
Recommended |
Anemia |
|
NK = Not known
|
|
Query
|
rev_hembleeddisorder |
String |
50
|
Recommended |
Bleeding disorder |
|
NK = Not known
|
|
Query
|
rev_immunorecurinfection |
String |
50
|
Required |
Recurrent Infections((>2 pneum or sinus infect/yr, >8 OM /yr, absesses)) |
|
NK = Not known
|
|
Query
|
rev_immunoigdeficiency |
String |
50
|
Recommended |
Ig Deficiency |
|
NK = Not known
|
|
Query
|
rev_immunocellimmunedef |
String |
50
|
Recommended |
Cell Mediated Immune Def. |
|
NK = Not known
|
|
Query
|
rev_immunoenvallergy |
String |
50
|
Required |
Environmental Allergies |
|
NK = Not known
|
|
Query
|
rev_immunomedallergy |
String |
50
|
Required |
Medication Allergies |
|
NK = Not known; NA=Not Applicable
|
|
Query
|
rev_immunomedallergy_det |
String |
255
|
Recommended |
Immunologic - Medication allergies - Specify |
|
|
|
Query
|
immuninfluenza |
Integer |
|
Required |
Immunologic - Influenza vaccine |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
rev_immunoimmunization |
String |
50
|
Recommended |
Immunizations |
|
NK = Not known
|
|
Query
|
immundtap |
Integer |
|
Recommended |
Immunologic - Immunizations up to date - Dtap |
0; 1
|
0 = No; 1 = Yes
|
|
Query
|
rev_immunoimmunizipv |
String |
255
|
Recommended |
Immunizations: IPV |
|
NK = Not known
|
|
Query
|
rev_immunoimmunizhib |
String |
255
|
Recommended |
Immunizations: HIB |
|
NK = Not known
|
|
Query
|
rev_immunoimmunizmmr |
String |
255
|
Recommended |
Immunizations: MMR |
|
NK = Not known
|
|
Query
|
rev_immunoimmunizhepa |
String |
255
|
Recommended |
Immunizations: HepA |
|
NK = Not known
|
|
Query
|
rev_immunoimmunizhepb |
String |
255
|
Recommended |
Immunizations: HepB |
|
NK = Not known
|
|
Query
|
rev_immunoimmunizvari |
String |
255
|
Recommended |
Immunizations: Varicella |
|
NK = Not known
|
|
Query
|
rev_immunoimmunizprev |
String |
255
|
Recommended |
Immunizations: Prevnar |
|
NK = Not known
|
|
Query
|
other_tsc1 |
Integer |
|
Recommended |
Other TSC-Related Conditions - Bone cysts |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
other_tsc2 |
Integer |
|
Recommended |
Other TSC-Related Conditions - Non-renal hamartoma |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
other_tsc3 |
Integer |
|
Recommended |
Other TSC-Related Conditions - Other? |
1; 2; 9
|
1 = Yes; 2 = No; 9 = Unknown
|
|
Query
|
other_tsc4 |
String |
255
|
Recommended |
Other TSC-Related Conditions - Other - Specify |
|
|
|
Query
|
gentest_tsc |
Integer |
|
Recommended |
Genetics - Genetic testing results known? |
1 :: 3
|
1 = Yes; 2 = No; 3 = Never tested
|
|
Query
|
gentest_tsc_res |
Integer |
|
Recommended |
Genetics - Genetic testing results |
1 :: 5
|
1 = TSC1, known disease causing; 2 = TSC1, uncertain significance; 3 = TSC2, known disease causing; 4 = TSC2, uncertain significance; 5 = No mutations identified
|
|
|
gentest_tsc_det |
String |
600
|
Recommended |
Genetics - Detailed Genetic Test Results |
|
|
|
|
custom_src_id |
String |
30
|
Recommended |
Subject ID how it's defined in lab/project (used for source IDs that change depending on timepoint/visit/etc.) |
|
|
|