|
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 |
|
|
record_id |
|
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 |
|
|
smh_visit_date |
|
sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
gender |
|
comments_misc |
String |
4,000
|
Recommended |
Miscellaneous comments on study, interview, methodology relevant to this form data |
|
|
comment, diagnosis_other_specify |
Query
|
data_derived |
Integer |
|
Required |
Data Derived From |
1::4; 999
|
1 = Physical examination; 2 = Medical record; 3 = Both; 4=Parental report; 999=missing
|
smh_data_aplus |
Query
|
diag_aofc |
Integer |
|
Recommended |
Age of First Concern(in months) |
0 :: 1200; -999
|
|
age_of_first_developmental_con, diag_aofc |
|
devel_concern |
String |
10
|
Recommended |
Developmental concern |
|
1 = Cognitive/learning; 2 = Behavior; 3 = Hearing; 4 = Motor; 5 = Language; 6= all
|
devel_concern |
Query
|
aut_diag |
Integer |
|
Required |
Autism-related diagnosis |
1::4;999
|
1 = Autism; 2 = Autism Spectrum Disorder; 3 = Asperger syndrome; 4 = PDD-NOS
|
autism_related_diagnosis |
Query
|
diag_ageatdiag |
Integer |
|
Recommended |
Age at diagnosis(in months) |
|
|
age_at_asd_diagnosis_______mon |
Query
|
diag_diagnosismadeby |
String |
50
|
Recommended |
Diagnosis made by |
Physician;Psychologist;Other; NK
|
NK = Not known
|
|
Query
|
preg_complic |
String |
10
|
Required |
Complications during pregnancy? |
|
NK = Not known
|
complications_during_pregnancy, preg_complic |
Query
|
preg_dxdrug |
String |
10
|
Required |
Used prescription medications during pregnancy? |
|
NK = Not known
|
preg_dxdrug, used_prescription_medications_ |
Query
|
full_term |
String |
10
|
Required |
Full-term delivery? 37-42 weeks |
|
NK = Not known
|
full_term |
|
info_gest |
String |
50
|
Recommended |
No. Weeks Gestation (G.A.) |
|
|
if_how_many_weeks_gestation, info_gest |
Query
|
birth_weight_lbs |
Float |
|
Recommended |
Birth weight pounds |
|
|
birth_weight_lbs, birth_weight_lbs_nk, birth_weight_ozs |
Query
|
ldnb_lgthin |
Float |
|
Recommended |
What was the babys length at birth(inches) |
|
-1 = Not known
|
birth_length_inches, ldnb_lgthin, ldnb_lngthin_nk |
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
|
|
ldnb_hosptotalbabyday, number_of_days_hospital_after_ |
Query
|
earlydev_walk |
Integer |
|
Recommended |
Age when first walked unaided (in months) |
|
995 = Still not reached; 996 = N/K, but apparently normal; 997 = N/K, but apparently delayed; 998 = N/A; 999 = N/K or not asked
|
age_at_walking_10_steps_months, earlydev_walk |
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
|
ad016, age_at_first_words_months_or_y |
Query
|
age_3word |
Integer |
|
Recommended |
Age at 3-word sentences (in months) |
|
|
age_3word, age_at_3_word_sentences_months |
Query
|
current_lang |
String |
10
|
Recommended |
Current speech/language. Verbal? |
|
NK = Not known
|
current_lang, current_speech_language_verbal |
Query
|
verb_words |
Integer |
|
Recommended |
If yes, how many words? |
1::4
|
1 = <10 Single words; 2 = Speaks in 10 or more single words; 3 = Speaks in 2 word combinations; 4 = Speaks in 3 or more word combinations
|
if_yes_how_many_words, verb_words |
Query
|
othmem_devdelay |
String |
50
|
Recommended |
Developmental Delay |
|
NK = Not known
|
developmental_delays, othmem_devdelay |
Query
|
school_perf |
Integer |
|
Recommended |
School Performance |
|
1 = Below grade level; 2 = At grade level; 3 = Above grade level; 4 = Mixed (at or above grade level in some areas and below grade level in other areas); -999 = milestone not reached
|
school_performance |
Query
|
rx_behav |
String |
10
|
Required |
Prescription medications for behavioral concerns |
|
NK = Not known
|
prescription_medications_behav, rx_behav |
Query
|
rx_phys |
String |
10
|
Required |
Prescription medications for physical health concerns |
|
NK = Not known
|
prescription_medications_physi, rx_phys |
Query
|
otc_med |
String |
10
|
Required |
Over-the-counter medications |
|
NK = Not known
|
otc_med, over_counter_medications |
Query
|
ds_med |
String |
10
|
Required |
Dietary supplements |
|
NK = Not known
|
dietary_supplemants, ds_med |
Query
|
gastro_spec_diet |
String |
50
|
Required |
Does subject have a special diet? |
|
NK = Not known
|
gastro_spec_diet, special_diet_e_g_gluten_free_e |
Query
|
rev_headmeningitis |
String |
50
|
Recommended |
Meningitis |
|
NK= Not known; NS = Not sure
|
meningitis |
Query
|
rev_headmeningitisage |
Integer |
|
Recommended |
Meningitis: Age(in months) |
0 :: 1200
|
|
meningitis_age |
Query
|
rev_headmeningitisorg |
String |
255
|
Recommended |
Meningitis: Organism |
|
|
meningitis_organism |
Query
|
rev_headencephalitis |
String |
50
|
Recommended |
Encephalitis |
|
NK= Not known; NS = Not sure
|
encephalitis |
Query
|
rev_headencephalitisage |
Integer |
|
Recommended |
Encephalitis: Age(in months) |
0 :: 1200
|
|
encephalitis_age |
|
rev_headencephalitisorg |
String |
255
|
Recommended |
Encephalitis: Organism |
|
|
encephalitis_organism |
Query
|
rev_headfebseiz |
String |
50
|
Recommended |
Febrile Seizures |
|
NK= Not known; NS = Not sure
|
febrile_seizures |
Query
|
rev_headfebseizages |
String |
255
|
Recommended |
Febrile Seizures: Age(S) |
|
|
febrile_seizures_age |
Query
|
rev_headseizure |
String |
50
|
Required |
Seizures |
|
NK= Not known; NS = Not sure
|
non_febrile_seizures |
|
rev_headseizureonset |
String |
255
|
Recommended |
Seizures: Onset |
|
|
onset |
Query
|
rev_headseizurecontrol |
String |
50
|
Required |
Seizures: Controlled |
|
NK = Not known
|
controlled |
Query
|
fhxcp |
String |
5
|
Required |
Cerebral Palsy |
|
NK = Not known
|
cerebral_palsy |
Query
|
hist_trauma |
String |
10
|
Recommended |
History of head trauma |
|
NK= Not known; NS = Not sure
|
history_of_head_trauma |
Query
|
rev_headimagestudy |
String |
50
|
Recommended |
Imaging Studies |
|
NK = Not known
|
brain_imaging_studies |
Query
|
rev_headimagestudytype |
String |
50
|
Recommended |
Imaging Studies: Type |
|
US;CT;MR;PET;EEG; MR; any combinations of these types
|
|
Query
|
rev_headimagestudyresult |
String |
255
|
Recommended |
Imaging Studies: Results |
|
Normal; Abnormal
|
results_check_any_of_above |
Query
|
vis_blind |
String |
10
|
Recommended |
Significant visual loss or congenital blindness |
|
NK = Not known
|
significant_visual_loss_or_con |
Query
|
rev_eartest |
String |
50
|
Recommended |
Hearing Testing: |
|
NK = Not known
|
hearing_testing |
|
rev_eartestages |
String |
255
|
Recommended |
Hearing Testing: Age(S) |
|
|
hearing_testing_age |
Query
|
rev_eartestresult |
String |
50
|
Recommended |
Hearing Testing: Result |
|
|
results |
Query
|
hear_loss |
String |
10
|
Required |
Deafness or significant hearing loss |
|
NK = Not known
|
deafness_or_significant_hearin |
Query
|
othmem_hearingcor |
String |
50
|
Recommended |
Hearing corrected? |
|
NK = Not known
|
if_yes_was_hearing_corrected_h |
Query
|
rev_earrecuotitis |
String |
50
|
Required |
Recurrent Otitis Media |
|
NK= Not known; NS = Not sure
|
recurrent_otitis_media_om |
Query
|
rev_earrecuotitisyear |
Integer |
|
Recommended |
Recurrent Otitis Media: #Year |
|
|
year |
Query
|
rev_earrecuotitisage |
Integer |
|
Recommended |
Recurrent Otitis Media: Age of Onset(in months) |
0 :: 1200
|
|
age_of_onset |
Query
|
rev_earpetube |
String |
50
|
Recommended |
PE Tubes |
|
NK = Not known
|
pe_ear_tubes |
Query
|
rev_mouthcleftlip |
String |
50
|
Recommended |
Is there a cleft lip and/or cleft palate? |
|
NK = Not known
|
cleft_lip |
Query
|
rev_mouthcleftpalate |
String |
50
|
Recommended |
Cleft Palate |
|
NK = Not known
|
cleft_palate |
Query
|
rev_teethdentalab |
String |
50
|
Recommended |
Dental abnormalities |
|
NK = Not known
|
dental_abnormalities |
Query
|
rev_neckspinalab |
String |
50
|
Recommended |
Spinal abnormalities |
|
NK = Not known
|
spinal_abnormalities |
Query
|
rev_skinbirthmark |
String |
50
|
Recommended |
Birthmarks (e.g., cafe-au-lait spots, white spots) |
|
NK = Not known
|
birthmarks_e_g_caf�u_lait_sp |
Query
|
rev_skineczema |
String |
50
|
Recommended |
Eczema |
|
NK = Not known
|
eczema |
Query
|
rev_skinabcesses |
String |
50
|
Required |
Skin Infections/Abcesses |
|
NK = Not known
|
skin_infections_abscesses |
Query
|
rev_pulbreathab |
String |
50
|
Recommended |
Abnormal Breathing |
|
NK = Not known
|
abnormal_breathing |
Query
|
rev_pulasthma |
String |
50
|
Required |
Asthma |
|
NK = Not known
|
asthma |
Query
|
rev_lung |
String |
10
|
Recommended |
Lung disease |
|
NK = Not known
|
lung_disease |
Query
|
rev_cardiomalfunc |
String |
50
|
Required |
Cardiac Malformation |
|
NK = Not known
|
cardiac_malformation |
Query
|
rev_cardiocyanosis |
String |
50
|
Recommended |
Cyanosis |
|
NK = Not known
|
cyanosis |
Query
|
rev_rythm |
String |
10
|
Recommended |
Abnormal rhythm or heart rate |
|
NK = Not known
|
abnormal_rhythm_or_heart_rate |
Query
|
rev_gastrodysphagia |
String |
50
|
Recommended |
Dysphagia |
|
NK = Not known
|
dysphagia_swallowing_difficult |
Query
|
rev_gastroreflux |
String |
50
|
Required |
Reflux |
|
NK= Not known; NS = Not sure
|
reflux |
Query
|
rev_gastrorefluxmed |
String |
50
|
Required |
Reflux: Medication Required |
|
NK = Not known
|
medication_required |
Query
|
rev_gastroother |
String |
50
|
Recommended |
Other feeding difficulties |
|
NK = Not known
|
other_feeding_difficulties |
Query
|
rev_endoprecocious |
String |
50
|
Recommended |
Precocious Puberty |
|
NK = Not known
|
precocious_early_puberty |
Query
|
rev_endoprecociousage |
Integer |
|
Recommended |
Precocious Puberty: Age(in months) |
0 :: 1200
|
|
age_of_puberty |
Query
|
rev_endohypothyroidism |
String |
50
|
Required |
Hypothyroidism |
|
NK = Not known
|
hypothyroidism |
Query
|
rev_endohyperthyroidism |
String |
50
|
Required |
Hyperthyroidism |
|
NK = Not known
|
hyperthyroidism |
Query
|
rev_endodiabetes |
String |
50
|
Required |
Diabetes |
|
NK = Not known
|
diabetes |
Query
|
rev_endodiabetestype |
String |
50
|
Required |
Diabetes: Type |
|
|
if_yes_check_type |
Query
|
rev_endohypoglycemia |
String |
50
|
Recommended |
Hypoglycemia |
|
NK = Not known
|
hypoglycemia |
Query
|
rev_hemanemia |
String |
50
|
Recommended |
Anemia |
|
NK = Not known
|
anemia |
Query
|
rev_hembleeddisorder |
String |
50
|
Recommended |
Bleeding disorder |
|
NK = Not known
|
bleeding_disorder |
Query
|
rev_immunorecurinfection |
String |
50
|
Required |
Recurrent Infections((>2 pneum or sinus infect/yr, >8 OM /yr, absesses)) |
|
NK = Not known
|
recurrent_infections |
Query
|
rev_immunoigdeficiency |
String |
50
|
Recommended |
Ig Deficiency |
|
NK = Not known
|
immunoglobulin_igg_deficiency |
Query
|
rev_immunocellimmunedef |
String |
50
|
Recommended |
Cell Mediated Immune Def. |
|
NK = Not known
|
cell_mediated_immune_deficienc |
Query
|
rev_immunoenvallergy |
String |
50
|
Required |
Environmental Allergies |
|
NK = Not known
|
environmental_allergies |
Query
|
rev_immunomedallergy |
String |
50
|
Required |
Medication Allergies |
|
NK = Not known; NA=Not Applicable
|
medication_allergies |
Query
|
rev_immunoimmunization |
String |
50
|
Recommended |
Immunizations |
|
NK = Not known
|
immunizations |
Query
|
gen_dis |
Integer |
|
Required |
Does the study subject have any of the following genetic disorders? |
1::5;999
|
1 = Rett syndrome; 2 = Down syndrome; 3 = Tuberous Sclerosis Complex; 4 = Fragile X syndrome; 5 = Neurofibromatosis I
|
|
Query
|
gen_dis_conf |
String |
10
|
Recommended |
If check above, is the genetic disorder confirmed by a physician-ordered genetic analysis |
|
NK = Not known
|
if_check_above_genetic_disorde |
Query
|
othmem_bipolar |
String |
50
|
Recommended |
Bipolar disorder (Manic/depression) |
|
NK = Not known
|
bipolar_disorder_manic_depress |
Query
|
othmem_depression |
String |
50
|
Recommended |
Depression |
|
NK = Not known
|
depression |
Query
|
othmem_anxiety |
String |
50
|
Recommended |
Anxiety disorder |
|
NK = Not known
|
anxiety_disorder |
Query
|
cfmh_othr_ocd |
Integer |
|
Recommended |
Obsessive compulsive disorder |
|
0 = No; 1 = Yes; -9 = Not known
|
obsessive_compulsive_disorder |
Query
|
othmem_schizophrenia |
String |
50
|
Recommended |
Schizophrenia |
|
NK = Not known
|
schizophrenia |
Query
|
othmem_selfinj |
String |
50
|
Recommended |
Self-injuring behavior |
|
NK = Not known
|
self_injuring_behavior |
Query
|
othmem_adhd |
String |
50
|
Recommended |
Attention deficit hyperactivity disorder (ADHD) |
|
NK = Not known
|
attention_deficit_hyperactivit |
Query
|
othmem_eatingdis |
String |
50
|
Recommended |
Eating disorder. Bulimia, Anorexia, other |
|
NK = Not known
|
eating_disorder_bulimia_anorex |
Query
|
othmem_eatingdis_type |
String |
100
|
Recommended |
If yes, specify type |
|
|
|
Query
|
sleep_pat |
String |
10
|
Recommended |
Disrupted sleep patterns |
|
NK = Not known
|
disrupted_sleep_patterns |
Query
|
touret |
String |
10
|
Required |
Tourette Syndrome |
|
NK= Not known; NS = Not sure
|
tourette_syndrome |
Query
|
birth_weight_oz |
Float |
|
Recommended |
Birth weight ounces |
|
|
|
|
cfmh_othr_autism |
Integer |
|
Recommended |
Autism |
1;0
|
0 = No; 1 = Yes
|
|
|
cfmh_othr_pddnos |
Integer |
|
Recommended |
Autism Spectrum Disorder |
0::2
|
0 = No; 1 = Yes; 2 = Cannot be ruled out
|
|
|
cfmh_othr_aspergers |
Integer |
|
Recommended |
Asperger's Syndrome |
1;0
|
0 = No; 1 = Yes
|
|
|
aut_diag_pddnos |
Integer |
|
Recommended |
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) |
0;1
|
0 = No; 1 = Yes
|
|
|
aut_diag_other |
Integer |
|
Recommended |
Autism-related diagnosis - Other |
0; 1
|
0 = No; 1 = Yes
|
|
|
diag_diagnosismadeby_a |
Integer |
|
Recommended |
Diagnosis made by - Physician |
0;1
|
0 = No; 1 = Yes
|
|
|
diag_diagnosismadeby_b |
Integer |
|
Recommended |
Diagnosis made by - Psychologist |
0;1
|
0 = No; 1 = Yes
|
|
|
diag_diagnosismadeby_c |
Integer |
|
Recommended |
Diagnosis made by - Other |
0;1
|
0 = No; 1 = Yes
|
|
|
diag_diagnosismadeby_d |
Integer |
|
Recommended |
Diagnosis made by - Not Known |
0;1
|
0 = No; 1 = Yes
|
|
|
hhb_med_yn_dt1 |
Integer |
|
Recommended |
Diabetes Type 1 |
0;1
|
0= No; 1= Yes
|
|
|
hhb_med_yn_dt2 |
Integer |
|
Recommended |
Diabetes Type 2 |
0;1
|
0= No; 1= Yes
|
|
|
rev_endodiabetestype_c |
Integer |
|
Recommended |
Diabetes Type - Not Known |
0;1
|
0 = No; 1 = Yes
|
|
|
rev_immunoimmunization_a |
Integer |
|
Recommended |
Immunizations - Not Known |
0;1
|
0 = No; 1 = Yes
|
|
|
rev_immunoimmunization_b |
Integer |
|
Recommended |
Immunizations - Up to date |
0;1
|
0 = No; 1 = Yes
|
|
|
rev_immunoimmunization_c |
Integer |
|
Recommended |
Immunizations - Behind |
0;1
|
0 = No; 1 = Yes
|
|
|
rev_immunoimmunization_d |
Integer |
|
Recommended |
Immunizations - None |
0;1
|
0 = No; 1 = Yes
|
|
|
cfmh_othr_retts |
Integer |
|
Recommended |
Rett's Syndrome |
1;0
|
0 = No; 1 = Yes
|
|
|
cfmh_othr_downssynd |
Integer |
|
Recommended |
Down's Syndrome |
1;0
|
0 = No; 1 = Yes
|
|
|
cfmh_othr_tuberscl |
Integer |
|
Recommended |
Tuberous Sclerosis |
1;0
|
0 = No; 1 = Yes
|
|
|
cfmh_othr_fragilex |
Integer |
|
Recommended |
Fragile X |
1;0
|
0 = No; 1 = Yes
|
|
|
neurofibromatosis |
Integer |
|
Recommended |
Neurofibromatosis I |
0;1
|
0 = No; 1 = Yes
|
|