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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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Description
Value Range
Notes
Data Structures with shared data
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Patient Chart Form

ptchart

01

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Element NameData TypeSizeRequiredDescriptionValue RangeNotesAliases
subjectkeyGUIDRequiredThe NDAR Global Unique Identifier (GUID) for research subjectNDAR*
src_subject_idString20RequiredSubject ID how it's defined in lab/project
interview_dateDateRequiredDate on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYYRequired field
interview_ageIntegerRequiredAge in months at the time of the interview/test/sampling/imaging.0 :: 1260Age 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.
genderString20RequiredSex of the subjectM;FM = Male; F = Female
siteString100RecommendedSiteStudy Site
treatgrpString2RecommendedTreatment Group Assignment (N, CC)
dupIntegerRecommendedDuration of Untreated Psychosis at Study Entry (weeks)
refothersString50RecommendedReferral source: specifyrefsrce
ethnicityString30RecommendedEthnicity of participantHispanic or Latino; Not Hispanic or Latino; Unknown
raceString30RecommendedRace of study subjectAmerican Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported
das1msString75RecommendedMarital statusmarital
curresIntegerRecommendedCurrent Residence1::71=Living alone, independent living situation; 2=Supported living arrangement, may include other residents, some supervision but not daily on site management; 3=Structured environment, e.g., board and care, group home, halfway house; 4=Family of origin or With Relatives, e.g., parents, grandparents, siblings; 5=Family of orientation, e.g., spouse, children; 6=Homeless or Homeless Shelter; 7=Other living situation
currestxString100RecommendedOther living situation, describe
educptIntegerRecommendedHighest Level of Education; Patient1::9; 991= Completed post-graduate training, advanced degree; 2=Some post-graduate training, no degree; 3=Completed college, 4 year degree;4=Some post secondary school, but no 4 year degree; including associate degrees & technical certificates or diploma; 5=Completed high school, diploma; 6=Attended high school, no diploma;7=Completed 8th grade, no high school; 8=Attended grade school, not through 8th grade; 9=No schooling; 99=Information not available
educmoIntegerRecommendedHighest Level of Education; Mother1::9; 991= Completed post-graduate training, advanced degree; 2=Some post-graduate training, no degree; 3=Completed college, 4 year degree;4=Some post secondary school, but no 4 year degree; including associate degrees & technical certificates or diploma; 5=Completed high school, diploma; 6=Attended high school, no diploma;7=Completed 8th grade, no high school; 8=Attended grade school, not through 8th grade; 9=No schooling; 99=Information not available
educfaIntegerRecommendedHighest Level of Education; Father1::9; 991= Completed post-graduate training, advanced degree; 2=Some post-graduate training, no degree; 3=Completed college, 4 year degree;4=Some post secondary school, but no 4 year degree; including associate degrees & technical certificates or diploma; 5=Completed high school, diploma; 6=Attended high school, no diploma;7=Completed 8th grade, no high school; 8=Attended grade school, not through 8th grade; 9=No schooling; 99=Information not available
studntynIntegerRecommendedIs the client currently a student0;10=No; 1=Yes
workynIntegerRecommendedIs the client currently working0;10=No; 1=Yes
job1ynIntegerRecommendedHow old was the client when he or she began his first paid job1;21=age provided; 2=never had regular paid employmet
job1ageIntegerRecommendedAge at first paid job
longestIntegerRecommendedlongest lasting job in monthslngjobmn
lnghrsIntegerRecommendedHow many hours per week did the client work at that job
spc_pthiString255RecommendedSpecify Occupation and Size of Business-Patient Highesttxocchip
spc_ptcuString255RecommendedSpecify Occupation and Size of Business- Patient currenttxocccup
spc_mohiString255RecommendedSpecify Occupation and Size of Business- Mother highesttxocchim
spc_fahiString255RecommendedSpecify Occupation and Size of Business- Father highesttxocchif
job_pthiIntegerRecommendedLevel of Occupation. Patient highest1;2;3;4;5;6;7;9; 991=Higher executive, proprietor of large concern, major professional; 2=Business manager of large concern, proprietor of medium sized business, lesser professional; 3=Administrative personnel, owner of small independent business, minor professional, owner of a large farm; 4=Clerical or sales worker, technician, owner of a little business, owner of a medium sized farm; 5=Skilled manual employee, owner of a small farm; 6=Machine operator, semi-skilled employee, tenant farmer who owns little equipment; 7=Unskilled employee, share cropper; 9=Never had paid employment/Not currently employed; 99=unknownocchipt
job_ptcuIntegerRecommendedLevel of Occupation. Patient current1::9; 991=Higher executive, proprietor of large concern, major professional; 2=Business manager of large concern, proprietor of medium sized business, lesser professional; 3=Administrative personnel, owner of small independent business, minor professional, owner of a large farm; 4=Clerical or sales worker, technician, owner of a little business, owner of a medium sized farm; 5=Skilled manual employee, owner of a small farm; 6=Machine operator, semi-skilled employee, tenant farmer who owns little equipment; 7=Unskilled employee, share cropper; 9=Never had paid employment/Not currently employed; 99=not scertainedocccurpt
dem_09aIntegerRecommendedMother highest occupation1::8;991=Higher executive, proprietor of large concern, major professional 2=Business manager or large concern, proprietor of medium-sized business, lesser professional 3=Administrative personnel, owner of small independent business, minor professional 4=Clerical or sales worker, technician, owner of little business 5=Skilled manual employee 6=Machine operator, semi-skilled employee 7=Unskilled employee 8=Never worked in paid employment 99=Not ascertainedocchimo
dem_09bIntegerRecommendedFather highest occupation1::9;991=Higher executive, proprietor of large concern, major professional ; 2=Business manager or large concern, proprietor of medium-sized business, lesser professiona;l 3=Administrative personnel, owner of small independent business, minor professional; 4=Clerical or sales worker, technician, owner of little business; 5=Skilled manual employee; 6=Machine operator, semi-skilled employee; 7=Unskilled employee; 8=Never worked in paid employment; 99=Not ascertained; 9 = Not in householdocchifa
ageillIntegerRecommendedAge at first psychiatric illness (years). (include ADHD, depression; do not include alcohol or substance abuse )
hpl_02IntegerRecommendedAge at first psychotic symptoms, e.g. delusions, hallucinations, thought disorderin yearsagesx
psyhspynIntegerRecommendedHas client had a psychiatric hospitalization0;10=No; 1=Yes
age_1st_hospIntegerRecommendedAge at first psychiatric hospitalization (years)agehosp
numhosp1IntegerRecommendedNumber of hospitalizations for psychiatric illness, include current hospitalization if patient is identified during an admission
tdayshospIntegerRecommendedTotal duration of psychiatric hospitalizations (days)
wkslsthpIntegerRecommendedTime since last psychiatric hospitalization (weeks); if client is identified during an admission, record time since prior hospitalization (If 6 days or less, round up to one week)
trt_setIntegerRecommendedTreatment setting, record the setting where patient was receiving treatment when first identified for screening1::51 = Inpatient ward; 2 = Day or partial hospital; 3 = Outpatient clinic; 4 = Other; 5=not in treatmenttrtset
trtsettxString100RecommendedTreatment setting, record the setting where client was receiving treatment when first identified for screening. Other specify
wkssetIntegerRecommendedHow long has the client been treated in that setting? (weeks). (Record 0 for those not in treatment settings)
lfapconIntegerRecommendedDuration (in DAYS) of Lifetime Anti-Psychotic medication taking at time of Consent to study
lfapblIntegerRecommendedDuration (in DAYS) of Lifetime Anti-Psychotic medication taking at time of Baseline assessment
curapblIntegerRecommendedDuration (in DAYS) of taking the CURRENT Anti-Psychotic medication at time of Baseline
sgafgaynIntegerRecommendedAntipsychotic Status at time of Consent0;10 = Not prescribed an antipsychotic; 1 = Prescribed one or more antipsychotics
dxbaseIntegerRecommendedSCID-assessed diagnosis at baseline that qualified the subject for study participation1::71 = Schizophrenia; 2 = Schizoaffective bipolar; 3 = Schizoaffective depressive; 4 = Schizophreniform provisional; 5 = Schizophreniform definite; 6 = Brief psychotic disorder; 7 = Psychotic disorder NOS
alcohlfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Alcohol1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
sedatlfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Sedatives1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
cannablfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Cannabis1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
stimulfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Stimulants1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
opioidlfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Opioids1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
cocalfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Cocaine1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
pcplfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. PCP1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
polylfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Poly-substance use1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
otherlfIntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview. Other1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
alcoh30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Alcohol1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
sedat30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Sedatives1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
cannab30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Cannabis1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
stimu30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Stimulants1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
opioid30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Opioids1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
coca30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Cocaine1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
pcp30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. PCP1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
poly30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Poly-substance use1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
other30IntegerRecommendedSCID-assessed LIFETIME substance use diagnoses at the baseline interview, 30 days. Other1::31 = did not meet criteria; 2 = met abuse criteria; 3 = met dependence criteria
psych_subonsetIntegerRecommendedPsychosis: subthreshold age of onsetin yearsageonset
eoscodeIntegerRecommendedETP End-of-Study Status Code1::111 = Incarcerated; 2 = Moved out of area; 3 = Medical event that precluded continued participation in study; 4 = Death; 5 = Treatment-related reason; e.g., did not initiate treatment/services or ended treatment/services due to dissatisfaction or severity of illness; 6 = Study-related reason; e.g., did not want to complete assessments, no longer wanted to be in research or the study, or did not like assessments; 7 = Belief of Recovery; specific statement that treatment was no longer necessary; 8 = Reason Not Known; e.g., left study without explanation and/or could no longer be located; and/or location known but failure to respond to repeated outreach attempts; 9 = Administrative study events or outside actions that occurred in client's life that interfered with study participation; e.g., temporary closure of study site, housing problems, health insurance problems; 10=Completed the Month 24 Primary Outcome Assessment; 11=Completed Other Study Assessments through 24 Months BUT did not complete the Month 24 Primary Outcome Assessment
gapynIntegerRecommendedETP Study GAP Code1;21 = Yes = At least one GAP in assessment data of greater than 3.5 months; 2 = No = NOT a gap in assessment data of greater than 3.5 months
surfnumIntegerRecommendedNumber of Monthly SURF-M Assessments0::25
surflastString5RecommendedVisit Number of Last SURF-M Assessment Obtained
visitString50RecommendedVisit nameCharacter description of each type of visit
days_baselineIntegerRecommendedDays since baseline
monthsblFloatRecommendedActual number of months from Baseline
chldynIntegerRecommendedDoes the client have children?0;10=No; 1=Yes
numchildIntegerRecommendednumber of children
chldlvynIntegerRecommendedDo the client's child(ren) live in the same household?1::31=Yes, all the children live with the client; 2=Yes, some of the children live with the client;3=No, none of the children live with the client;
children_householdIntegerRecommendedNumber children household
chldrespIntegerRecommendedDoes the client assume primary responsibility for the care of the child(ren) that live with them?1::41=Yes, full responsibility; 2=Yes, partial responsibility; 3=Yes, minimal responsibility; 4=No;
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

At the top of this page you can also:

  • Use the search bar to filter the elements displayed. This will not filter on the Size of Required columns
  • Download a copy of this definition in CSV format
  • Download a blank CSV submission template prepopulated with the correct structure header rows ready to fill with subject records and upload

Please email the The NDA Help Desk with any questions.

Distribution for DataStructure: ptchart01 and Element:
Chart Help

Filters enable researchers to view the data shared in NDA before applying for access or for selecting specific data for download or NDA Study assignment. For those with access to NDA shared data, you may select specific values to be included by selecting an individual bar chart item or by selecting a range of values (e.g. interview_age) using the "Add Range" button. Note that not all elements have appropriately distinct values like comments and subjectkey and are not available for filtering. Additionally, item level detail is not always provided by the research community as indicated by the number of null values given.

Filters for multiple data elements within a structure are supported. Selections across multiple data structures will be supported in a future version of NDA.