|
subjectkey |
GUID |
|
Required |
|
The NDAR Global Unique Identifier (GUID) for research subject |
NDAR*
|
|
CandidateGUID, candidateguid, guid, nihguid, plot_ndar_guid, pseudo_guid, subject_key |
|
src_subject_id |
String |
20
|
Required |
|
Subject ID how it's defined in lab/project |
|
|
IBISID, child_id_full, clinical_barcode, demo_study_id, hcpa_id, ibisid, participant_id, participantid, pid, plot_id, plotstudy_full_id, record_id, session_id, src_subject, subject_id, subjectid, subjectnumber, subjid_display |
|
interview_date |
Date |
|
Required |
|
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
Date_taken, assessment_dt, bl_visit_date, consentdate, consented_study, datacollecteddate, date, date_demographics, date_interview_ses, date_of_interview_contact, date_taken, interviewdate, intvdate, plot_visit1_date, pp_date, profile_date, testing_date, visit_date |
|
interview_age |
Integer |
|
Required |
|
Age in months at the time of the interview/test/sampling/imaging. |
0 :: 1260
|
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.
|
Candidate_Age_in_Months, age, age_a, age_m_consent, ageateval, ch_age, demo_age, demqage, intvage, plot_age_totalmonths, profile_age, test_age, total_age_in_months |
|
sex |
String |
20
|
Required |
|
Sex of subject at birth |
|
M = Male; F = Female; O=Other; NR = Not reported
|
ch_sex, demo_sex, demqsex, gender, genderid, plot_child_sex, sex, sex_a |
Query
|
race |
String |
30
|
Required |
|
Race of study subject |
|
|
demo_race, demo_white, demqrea2, race_dem, raceid |
|
ethnic_group |
String |
255
|
Recommended |
|
Ethnic group |
|
|
demo_ethnicity, demqrea1, ethnicity_dem, ethnicityid, hispanic |
Query
|
phenotype |
String |
200
|
Required |
|
Phenotype/diagnosis for the subject |
|
|
Cohort, SubprojectID, ados_scoresumm_adosdiag, cohort, diagnosis, genderid, group, p1selectdiagnosis, project_category, race_dem, scid_diagnosis, scoresumm_overalldiag, subprojectid |
Query
|
phenotype_description |
String |
4,000
|
Required |
|
Description of the phenotype for the subject |
|
|
developmental_diff_sib_1, fmr1_status, p2whatisyourlevelofcertainty |
Query
|
twins_study |
String |
100
|
Required |
|
Is this study of twins? |
|
|
|
Query
|
sibling_study |
String |
50
|
Required |
|
Was it sibling study? Study of sibling(s) of autistic child. |
|
|
|
Query
|
family_study |
String |
100
|
Required |
|
Was it family study? Study of biological mother, biological father and/or sibling of proband. |
|
|
|
|
family_user_def_id |
String |
25
|
Conditional |
family_study == 'Yes' |
Family Pedigree User-Defined ID |
|
|
familyid, id |
|
subjectkey_mother |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's biological mother |
NDAR*
|
|
subject_key_mother |
|
src_mother_id |
String |
100
|
Conditional |
notNull(subjectkey_mother) |
site specific mother ID |
|
|
biomother, mat_id, motherid, src_subject_id_mother |
|
subjectkey_father |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's biological father |
NDAR*
|
|
subject_key_father |
|
src_father_id |
String |
100
|
Conditional |
notNull(subjectkey_father) |
site specific father ID |
|
|
fatherid, pat_id, src_subject_id_father |
|
subjectkey_sibling1 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
ProbandGUID |
|
src_sibling1_id |
String |
100
|
Conditional |
notNull(subjectkey_sibling1) |
site specific sibling1 ID |
|
|
probandid |
Query
|
sibling_type1 |
String |
255
|
Conditional |
notNull(subjectkey_sibling1) |
Type of Sibling |
|
|
ProbandGender, relationship_sib_1 |
|
subjectkey_sibling2 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling2_id |
String |
100
|
Recommended |
|
site specific sibling2 ID |
|
|
|
Query
|
sibling_type2 |
String |
255
|
Recommended |
|
sibling type |
|
|
|
|
subjectkey_sibling3 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling3_id |
String |
100
|
Recommended |
|
site specific sibling3 ID |
|
|
|
Query
|
sibling_type3 |
String |
255
|
Recommended |
|
sibling type |
|
|
|
|
subjectkey_sibling4 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling4_id |
String |
100
|
Recommended |
|
site specific sibling4 ID |
|
|
|
Query
|
sibling_type4 |
String |
255
|
Recommended |
|
sibling type |
|
|
|
Query
|
zygosity |
String |
255
|
Conditional |
twins_study == 'Yes' |
Zygosity |
|
999=unknown
|
multibirthtypeid |
Query
|
sample_taken |
String |
50
|
Required |
|
Was a sample taken at this interview/during this project time |
|
|
dna_sample_collected |
|
sample_id_original |
String |
100
|
Conditional |
sample_taken == 'Yes' |
Original, user-defined Sample ID |
|
|
|
Query
|
sample_description |
String |
3,500
|
Conditional |
sample_taken == 'Yes' |
Sample description: tissue type, i.e. blood, saliva, brain etc. |
whole blood; saliva; brain; urine; serum; plasma; CSF; IPS; Fibroblast; Neuronal Progenitor; skin biopsy; temporal cortex; lymphoblastoid cell line; unknown; semen; frontal cortex; parietal cortex; basal ganglia; Placenta; hair; occipital visual cortex; cerebellum; spleen; stool; muscle; kidney; liver; heart; cord blood; nasal swab; DNA; RNA; breastmilk; buccal
|
|
|
Query
|
biorepository_name |
String |
100
|
Conditional |
sample_taken == 'Yes' |
Biorepository where sample is stored |
|
|
subjecttype |
|
sample_id_biorepository |
String |
100
|
Conditional |
sample_taken == 'Yes' |
Biorepository Sample ID |
|
|
biospc_rutgers_id, rucdrnum |
|
patient_id_biorepository |
String |
100
|
Conditional |
notNull(biorepository_name) |
Biorepository Patient ID |
|
|
dxsmryid |
|
cell_id_original |
String |
100
|
Recommended |
|
Original, user-defined cell line ID |
|
|
|
|
cell_id_biorepository |
String |
100
|
Recommended |
|
Biorepository cell line ID |
|
|
|
|
agre_subject_id |
String |
100
|
Recommended |
|
AGRE subject ID |
|
|
|
|
sfari_subject_id |
String |
100
|
Recommended |
|
SFARI subject ID |
|
|
|
|
cpea_site |
String |
100
|
Recommended |
|
CPEA/STAART site name |
|
|
|
Query
|
cpea_id |
String |
100
|
Recommended |
|
CPEA/STAART subject ID |
|
|
|
|
blood_id |
String |
100
|
Recommended |
|
blood ID |
|
|
dna_sample_lab_id |
Query
|
adi_dx |
String |
15
|
Recommended |
|
ADI: Diagnosis |
|
|
|
|
ados_dx |
String |
15
|
Recommended |
|
ADOS Diagnosis |
|
|
|
|
agp_family_id |
String |
100
|
Recommended |
|
AGP family ID |
|
|
|
|
agp_subject_id |
String |
100
|
Recommended |
|
AGP subject ID |
|
|
|
Query
|
site |
String |
101
|
Recommended |
|
Site |
|
Study Site
|
biorepository_site_id, fxs_site_name_other, siteid |
|
comments_misc |
String |
4,000
|
Recommended |
|
Miscellaneous comments on study, interview, methodology relevant to this form data |
|
|
demo_comments, dna_comments, fspgod, genderdescr, pi_staff |
Query
|
week |
Float |
|
Recommended |
|
Week in level/study |
|
99=week 10-week 14
|
|
|
study |
String |
100
|
Recommended |
|
Study; The code for each individual study |
|
|
biorepository_study_number, dna_sample_usable |
Query
|
reg_edu |
Integer |
|
Recommended |
|
Education |
1::34; 999
|
1=None; 2=Preschool; 3=Kindergarten; 4=1st grade; 5=2nd grade; 6=3rd grade; 7=4th grade; 8=5th grade; 9=6th grade; 10=7th grade; 11=8th grade; 12=9th grade; 13=10th grade; 14=11th grade; 16=High School Graduate; 17=GED; 18=Some college credit but less than 1 year; 19= Some college, no degree; 20=Associates degree (e.g., AA, AS); 21=Bachelor's degree (e.g., BA, AB, BS); 22=Masters degree (e.g., MA, MS, MEng, MEd, MSW, MBA); 23=Professional degree (e.g., MD, DDS, DVM, LLB, JD); 24=Doctorate degree (e.g., PhD, EdD); 25=One or more years of college at a 2-year program, no degree; 26=One year of college at a 4-year program, no degree; 27=Two years of college at a 4-year program, no degree; 28=Three years or more of college at a 4-year program, no degree; 29= Trade or vocational school; 30=Eighth grade or less; 999=Unknown
|
|
Query
|
reg_mother_edu |
Integer |
|
Recommended |
|
Mother Education |
1::33; 999
|
1=None; 2=Preschool; 3=Kindergarten; 4=1st grade; 5=2nd grade; 6=3rd grade; 7=4th grade; 8=5th grade; 9=6th grade; 10=7th grade; 11=8th grade; 12=9th grade; 13=10th grade; 14=11th grade; 16=High School Graduate; 17=GED; 18=Some college credit but less than 1 year; 19= Some college, no degree; 20=Associates degree (e.g., AA, AS); 21=Bachelor's degree (e.g., BA, AB, BS); 22=Masters degree (e.g., MA, MS, MEng, MEd, MSW, MBA); 23=Professional degree (e.g., MD, DDS, DVM, LLB, JD); 24=Doctorate degree (e.g., PhD, EdD); 25=One or more years of college at a 2-year program, no degree; 26=One year of college at a 4-year program, no degree; 27=Two years of college at a 4-year program, no degree; 28=Three years or more of college at a 4-year program, no degree; 29= Trade or vocational school; 30=Eighth grade or less; 31 = Some High School (9th-11th grade); 32 = Did not complete high school; 33 = Postgraduate degree (MA, MBA, PhD, JD, MD); 999=Unknown
|
demqmom2 |
Query
|
ca243 |
Integer |
|
Recommended |
|
What handedness do you consider yourself? |
1::3
|
1=Right; 2=Left; 3=Mixed
|
overall_handedness, reg_handedness |
Query
|
ccc2english |
Integer |
|
Recommended |
|
Does the subject speak English as a primary language? |
|
0 = No; 1 = Yes; -9 = Missing value
|
|
|
primary_language |
String |
255
|
Recommended |
|
Subject's Primary Language |
|
|
demqlangchild1 |
|
physiological_responses_type |
String |
100
|
Recommended |
|
Description of monitored physiological responses |
|
|
|
Query
|
reg_father_edu |
Integer |
|
Recommended |
|
Father Education |
1::31; 999
|
1=None; 2=Preschool; 3=Kindergarten; 4=1st grade; 5=2nd grade; 6=3rd grade; 7=4th grade; 8=5th grade; 9=6th grade; 10=7th grade; 11=8th grade; 12=9th grade; 13=10th grade; 14=11th grade; 16=High School Graduate; 17=GED; 18=Some college credit but less than 1 year; 19= Some college, no degree; 20=Associates degree (e.g., AA, AS); 21=Bachelor's degree (e.g., BA, AB, BS); 22=Masters degree (e.g., MA, MS, MEng, MEd, MSW, MBA); 23=Professional degree (e.g., MD, DDS, DVM, LLB, JD); 24=Doctorate degree (e.g., PhD, EdD); 25=One or more years of college at a 2-year program, no degree; 26=One year of college at a 4-year program, no degree; 27=Two years of college at a 4-year program, no degree; 28=Three years or more of college at a 4-year program, no degree; 29= Trade or vocational school; 30=Eighth grade or less; 31 = Some High School (9th-11th grade); 999=Unknown
|
demqdad2 |
Query
|
employ_status |
Integer |
|
Recommended |
|
Current employment status |
1::13
|
1=Unemployed; 2=Unemployed Stay-at-home parent; 3=Part-Time Student; 4=Full-Time Student; 5=Disability/Unemployed; 6=Disability/Part-Time Employment; 7=Employed Part Time; 8=Employed Full Time; 9=Retired/Part-Time Employment; 10=Retired/Unemployed.; 11 = Student; 12 = Caring for children, elders and house; 13 = Unemployed, volunteer work
|
|
|
bkgrnd_med |
String |
1,020
|
Recommended |
|
Medication information |
|
|
medication |
Query
|
demo_logfinc |
Float |
|
Recommended |
|
log of family income from wave one of the study |
|
|
|
Query
|
demo_wt_n_nr |
Float |
|
Recommended |
|
sampling weights used to account for sample design and non response rate |
|
|
|
Query
|
demo_stratum |
Float |
|
Recommended |
|
stratum |
|
|
|
|
grade |
String |
50
|
Recommended |
|
Current Grade |
|
|
|
|
service_specialed |
String |
5
|
Recommended |
|
Special Education |
|
|
special_education |
|
asisped |
String |
200
|
Recommended |
|
Specify special education services |
|
|
special_education_spc |
Query
|
brain_injury |
Integer |
|
Recommended |
|
Brain Injury? |
1::3
|
1=Yes; 2=No; 3=NA
|
|
|
trt_grp |
String |
10
|
Recommended |
|
Treatment Group Assignment |
1;1AO;1CT;2; 3;4;5;6;7;8;9;10;11;12; O; P; CCA; GCT; TCT; TAU; CGC; ESDM; NA
|
1=Group 1 first 8 weeks; 2=Group 2; 3=Group 3; 4 =active; 5=sham; 6=none; 7=ESDM High intensity; 8=ESDM Low intensity; 9=EIBI High intensity; 10=EIBI Low intensity; ESDM = Early Start Denver Model; EIBI = Early and Intensive Behavioral Intervention; 11 = Navigator; 12 = Care manager; 13=Waitlist Control; 14=Treatment; 1AO=Group 1 8 week add on; 1CT=Group 1 8 week cross taper; O=Oxytocin; P=Placebo; CCA=Community Control Arm; GCT=Generalized Cognitive Training; TCT=Targeted Cognitive Training; TAU=Treatment as Usual; CGC = Computer Games Control; NA=not assigned to treatment group
|
treatment |
|
version_form |
String |
121
|
Recommended |
|
Form used/assessment name |
|
|
redcap_event_name |
Query
|
visit |
String |
60
|
Recommended |
|
Visit name |
|
|
eventname, visit_checklist, visits |
|
reason_nint |
Integer |
|
Recommended |
|
Reason for not conducting interview |
0::9
|
0=Conducted interview; 1=Withdrawn by CPI; 2=Withdrawn voluntarily; 3=Incoherent speech for any cause; 4=Poverty of content or too little speech; 5=Disturbance of consciousness; 6=Lost to follow-up; 7=Refused; 8=Other reasons [specify...]
|
reason |
|
reason_nint_other |
String |
4,000
|
Recommended |
|
Reason Other - Please specify |
|
|
reason_other |
|
liv_sit |
Integer |
|
Recommended |
|
Living Situation |
1::3;-9
|
1=Hospital inpatient; 2=Supported housing; 3=Independent; -9 = Unknown/Not Reported
|
living |
|
height_met |
Float |
|
Recommended |
|
Height - Metric Unit |
|
999 = Missing
|
height |
|
weight_met |
Float |
|
Recommended |
|
Weight - Metric Unit |
|
999 = Missing
|
weight |
|
bmi |
Float |
|
Recommended |
|
body mass index of subject |
|
-9 = Missing
|
|
|
q013 |
Integer |
|
Recommended |
|
Adverse Events: assessment completed? |
0; 1
|
0=no, 1=yes
|
adverse |
|
medchng |
Integer |
|
Recommended |
|
Changes made to meds |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
medication |
|
capacity |
Integer |
|
Recommended |
|
Ongoing capacity to consent |
|
0=No; 1=Yes
|
|
|
blood_1 |
Integer |
|
Recommended |
|
Consented to blood collection |
|
0=No; 1=Yes
|
|
|
blood_2 |
Integer |
|
Recommended |
|
Taken for blood collection |
|
0=No; 1=Yes
|
|
|
country |
Integer |
|
Recommended |
|
Personal details. Country of origin |
1::6
|
1=UK; 2=West Indies; 3=India and Asia; 4=Africa; 5=Other European; 6=Other
|
demo_5a |
|
country_origin |
String |
100
|
Recommended |
|
Country of Origin |
|
|
demo_5b |
|
demo_6 |
Integer |
|
Recommended |
|
Are you currently employed or in school? |
0;1; 9999
|
1= Yes; 0= No; 9999= no data
|
|
|
year_mta |
Integer |
|
Recommended |
|
Year in study |
|
|
visit_year, visit_year� |
|
chronic_ticdisorder_motor |
Integer |
|
Recommended |
|
DSM-IV-tr Chronic motor tic disorder |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
chronic_ticdisorder_vocal |
Integer |
|
Recommended |
|
DSM-IV-tr Chronic vocal tic disorder |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
chronicticdisorder_combined |
Integer |
|
Recommended |
|
Chronic tic disorder- combined type (one motor and one vocal tic) |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
provisional_ticdisorder |
Integer |
|
Recommended |
|
Provisional Tic Disorder (DSM-V) |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
transient_ticdisorder |
Integer |
|
Recommended |
|
DSM-IV-tr Transient Tic Disorder |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
tic_disorder_nos |
Integer |
|
Recommended |
|
DSM-IV-tr Tic Disorder NOS |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
p53i3 |
Integer |
|
Recommended |
|
Transient Tic Disorder - Age at onset of first episode (months) |
|
|
ticageonset |
|
ticsxcur |
Integer |
|
Recommended |
|
Current tic symptoms (past week) |
0;1;9
|
0=No; 1=Yes; 9=Unratable
|
|
|
ticdxoverride |
Integer |
|
Recommended |
|
Tic disorder override- clinician override of algorithm |
0;1
|
0=False=No override; 1=True=Override
|
|
|
ocddiagnoisid |
Integer |
|
Recommended |
|
DSM-IV-tr OC disorders |
0::3;9
|
0=No OC disorder; 1=OCD; 2=OC subclinical; 3=OC symptoms; 9=Unratable
|
|
|
ocddiagnois |
String |
50
|
Recommended |
|
OC disorder descriptions |
|
|
|
|
hxocdage |
Integer |
|
Recommended |
|
Onset of OCD |
|
|
ocageonset |
|
ocsxcur |
Integer |
|
Recommended |
|
Current OC symptoms (past week) |
0;1;9
|
0=No; 1=Yes; 9=Unratable
|
|
|
ocdxoverride |
Integer |
|
Recommended |
|
OC disorder override- clinician override of algorithm |
0;1
|
0=False=No override; 1=True=Override
|
|
|
trichid |
Integer |
|
Recommended |
|
DSM-IV-tr Trichotillomania |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
trichage |
Integer |
|
Recommended |
|
Trichotillomania (hairpulling) Onset Age |
|
months
|
trichageonset |
|
trichsxcur |
Integer |
|
Recommended |
|
Current Trich symptoms (past week) |
0;1;9
|
0=No; 1=Yes; 9=Unratable
|
|
|
adhd_combined |
Integer |
|
Recommended |
|
ADHD: Combined type present in past 6 months |
0;1; 9
|
0 = No; 1 = Yes; 9=unable to rate
|
|
|
adhd_predom_inattent |
Integer |
|
Recommended |
|
DSM-IV-tr ADHD predominantly inattentive subtype |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
adhd_predom_hyperimpul |
Integer |
|
Recommended |
|
DSM-IV-tr ADHD predominantly hyperactive-Impulusive subtype |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
grantnum |
Integer |
|
Recommended |
|
Grant number (1st or 2nd) |
1;2
|
1=grant1 (2011); 2=grant2 (2018)
|
|
|
adhd_subclinical |
Integer |
|
Recommended |
|
Subclinical ADHD |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
ksads_adhd_age |
Integer |
|
Recommended |
|
ADHD Age of Onset, months |
|
|
adhd_ageonset |
|
adhdsxcur |
Integer |
|
Recommended |
|
Current ADHD symptoms (past week) |
0;1;9
|
0=No; 1=Yes; 9=Unratable
|
|
|
adhddxoverride |
String |
20
|
Recommended |
|
ADHD disorder override- clinician override of algorithm |
0;1
|
0=False=No override; 1=True=Override
|
|
|
flag_atypical |
Integer |
|
Recommended |
|
Flagged for Atypical presentation |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_psychosis |
Integer |
|
Recommended |
|
Flagged for Psychosis |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_pdd_asd |
Integer |
|
Recommended |
|
Flagged for PDD or Autism Spectrum |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_other_neurolog |
Integer |
|
Recommended |
|
Flagged for Other Neurological condition |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_congenital_anom |
Integer |
|
Recommended |
|
Flagged for Congenital anomalies |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_genetic_chromosomal |
Integer |
|
Recommended |
|
Flagged for Genetic Syndrome/ Chromosomal abnormality |
0;1
|
0=No flag; 1=Flag
|
|
|
dxsmrysubmitted |
Integer |
|
Recommended |
|
Data submitted to coordinating center |
0;1
|
0=False=Not submitted; 1=True=Submitted
|
|
|
flag_other_psych |
Integer |
|
Recommended |
|
Flagged for Other significant PSYCHIATRIC history |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_other_medical |
Integer |
|
Recommended |
|
Flagged for Other significant MEDICAL history |
0;1
|
0=No flag; 1=Flag
|
|
|
flag_other_desc |
String |
100
|
Recommended |
|
Flagged for Other |
|
|
flagotherdescr |
|
othergeneticstudy |
Integer |
|
Recommended |
|
If participated in another genetic study |
0;1;9
|
0=No; 1=Yes; 9=Unknown
|
|
|
othergeneticstudydescr |
String |
75
|
Recommended |
|
Name of other genetic study |
|
|
|
|
subsiteid |
String |
20
|
Recommended |
|
Subsite ID |
|
|
|
|
evaluated |
Integer |
|
Recommended |
|
Subject evaluated (Y/N) |
0;1
|
0=No; 1=Yes
|
|
|
evaldate |
Date |
|
Recommended |
|
Evaluation date |
|
|
|
|
multibirthid |
Integer |
|
Recommended |
|
Code for multiple birth |
0::2
|
0=No; 1=Twin; 2=Multiple (>twin)
|
|
|
tourettes_disorder |
Integer |
|
Recommended |
|
DSM-IV-tr Tourette's disorder |
0;1;9
|
0=Unaffected; 1=Definite; 9=Unratable
|
|
|
sample |
Integer |
|
Recommended |
|
Training or randomized case |
1::5
|
1 = randomized; 2 = training; 3=randomized-control; 4=randomized-intervention; 5=concurrent cohort-intervention
|
|
|
race_other |
String |
100
|
Recommended |
|
Race of Respondent Specify |
|
|
|
|
respond |
Integer |
|
Recommended |
|
Respondent |
|
1 = Parent; 2 = Teacher; 3=Self; 4= Other; 5= Significant other; 6 = Parent 1; 7 = Parent 2; 999 = Not available
|
form_ext |
|
date_confirmed_phenotype |
Date |
|
Recommended |
|
Date when subject was diagnosed |
|
|
|
|
pos_years |
Integer |
|
Recommended |
|
Number of years at position |
0::100;-9;999
|
-9 = Unknown/Not Reported; 999 = N/A
|
|
|
position1 |
String |
150
|
Recommended |
|
Title of Employment Position |
|
-9 = Unknown/Not Reported
|
|
|
timepoint_label |
String |
50
|
Recommended |
|
Timepoint/visit label |
|
|
|
|
trt_grp_desc |
String |
2,000
|
Recommended |
|
Treatment Group Assignment - Description |
|
-9 = Unknown/Not Reported
|
|
|
longform_id |
String |
50
|
Recommended |
|
Long form of Subject ID |
|
|
|
|
src_sibling6_id |
String |
100
|
Recommended |
|
site specific sibling6 ID |
|
|
|
|
sibling_type6 |
String |
255
|
Recommended |
|
sibling type |
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
|
|
|
subjectkey_sibling7 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling7_id |
String |
100
|
Recommended |
|
site specific sibling7 ID |
|
|
|
|
sibling_type7 |
String |
255
|
Recommended |
|
sibling type |
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
|
|
|
subjectkey_sibling8 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling8_id |
String |
100
|
Recommended |
|
site specific sibling8 ID |
|
|
|
|
sibling_type8 |
String |
255
|
Recommended |
|
sibling type |
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
|
|
|
subjectkey_sibling9 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling9_id |
String |
100
|
Recommended |
|
site specific sibling9 ID |
|
|
|
|
sibling_type9 |
String |
255
|
Recommended |
|
sibling type |
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
|
|
|
subjectkey_sibling10 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling10_id |
String |
100
|
Recommended |
|
site specific sibling10 ID |
|
|
|
|
sibling_type10 |
String |
255
|
Recommended |
|
sibling type |
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
|
|
|
subjectkey_sibling5 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
src_sibling5_id |
String |
100
|
Recommended |
|
site specific sibling5 ID |
|
|
|
|
sibling_type5 |
String |
255
|
Recommended |
|
sibling type |
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
Full Brother FB; Half Mother Brother HMB; Half Father Brother HFB; Full Sister FS; Half Mother Sister HMS; Half Father Sister HFS; Adopted Brother AB; Adopted Sister AS; Unknown
|
|
|
subjectkey_sibling6 |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for subject's sibling |
NDAR*
|
|
|
|
subjectkey_femalecaregiver |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for non-biological mother or female caregiver |
|
|
|
|
subjectkey_malecaregiver |
GUID |
|
Recommended |
|
The NDAR Global Unique Identifier (GUID) for non-biological father or male caregiver |
|
|
|
|
src_femalecaregiver_id |
String |
20
|
Recommended |
|
Subject ID for non-biological mother or female caregiver how it is defined in lab/project |
|
|
|
|
src_malecaregiver_id |
String |
20
|
Recommended |
|
Subject ID for non-biological father or male caregiver how it is defined in lab/project |
|
|
|
|
ref_child_id |
String |
50
|
Recommended |
|
Referencing Child ID how it is defined in lab/project |
|
|
|
|
child_subjectkey |
GUID |
|
Recommended |
|
Original GUID |
|
|
|
|
screen_randomization |
Integer |
|
Recommended |
|
Screening group assignment |
0;1
|
0 = Experimental (pediatric practice randomized to early screening group); 1 = Usual Care (pediatric practice randomized to usual care)
|
|
|
fetal_age |
Integer |
|
Recommended |
|
Age of the fetus (i.e., gestational age) in days |
0::322
|
|
|
|
fetal_age_type |
Integer |
|
Recommended |
|
Type of gestational age used for fetal_age |
1;2
|
1 = Postovulatory gestational age, defined as days since the last ovulation, expected term of 266 days; 2 = Postmenstrual gestational age, days since the last menstrual period, expected term of 280 days
|
|
|
studyphase |
Integer |
|
Recommended |
|
Study Phase |
1::6; -888; -999
|
1=Phase 1: Treatment as Usual(TAU); 2=Phase 2: Screening Only; 3=Phase 3: Intervention; 4=Focus Groups; 5=Open Trial; 6=Randomized Trial; -888=Not Applicable; -999=Missing;
|
|
|
gender_identity |
Integer |
|
Recommended |
|
Gender identity: Do you identify as: |
1::9
|
1 = Female; 2 = Male; 3 = Other; 4 = Agender; 5 = Nonbinary/Fluid; 6 = Transgender female; 7 = Transgender male; 8 = Genderqueer; 9 = Do not wish to report
|
|
|
demo_sex_tgender |
Integer |
|
Recommended |
|
Transgender |
0;1;2
|
0=No;1=Yes;2=Maybe
|
|
|
teen_subject_id |
String |
20
|
Recommended |
|
Teen subject ID the parent is reporting on |
|
|
|
|
trtarm |
String |
200
|
Recommended |
|
Treatment arm |
|
|
|