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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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The filters you have selected from various query interfaces will be stored here, in the 'Filter Cart'. The database will be queried using filters added to your 'Filter Cart', when multiple filters are defined, each will be executed using 'AND' logic, so with each filter that is applied the result set gets smaller.

From the 'Filter Cart' you can inspect each of the filters that have been defined, and you also have the option to remove filters. The 'Filter Cart' itself will display the number of filters applied along with the number of subjects that are identified by the combination of those filters. For example a GUID filter with two subjects, followed by a GUID filter for just one of those subjects would return only data for the subject that is in both GUID filters.

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Description
Value Range
Notes
Data Structures with shared data
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Enrollment Form

enrol

01

Download Definition as
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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/projectrandid, stepid, subjid
interview_dateDateRequiredDate on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYYRequired fieldvisit_date
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.age
genderString20RequiredSex of the subjectM;FM = Male; F = Femalecomments
daysrzIntegerRecommendeddays since randomizationstudyday, visitdt
certcodeIntegerRecommendedstepbd certification code
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
agege15IntegerRecommendedcurrent age ge 15 years0;1;-70=No; 1=Yes; -7=Refused
inmddIntegerRecommendedIN: meets DSM-IV criteria0;1;-7;-90=No; 1=Yes; -9=unknown; -7=refuseddsmivcri
ptconIntegerRecommendedPatient consented
0;1
0=No; 1=Yescnsnt, consent
dschizoIntegerRecommendeddsm iv criteria shizoaffective0;1;-70=No; 1=Yes; -7=Refused
preginfoIntegerRecommendedinform md of pregnancy0;1;-70=No; 1=Yes; -7=Refused
noncomplIntegerRecommendedunwilling or unable to comply0;1;-70=No; 1=Yes; -7=Refused
novisitIntegerRecommendedunable to attend scp visit0;1;-70=No; 1=Yes; -7=Refused
noreadIntegerRecommendedpatient cannot read0;1;-70=No; 1=Yes; -7=Refused
nowriteIntegerRecommendedpatient cannot write0;1;-70=No; 1=Yes; -7=Refused
noenglshIntegerRecommendedpatient not fluent in english0;1;-70=No; 1=Yes; -7=Refused
ncothIntegerRecommendedNC: other reason0;10=Not checked; 1=Checked
ccworkIntegerRecommendedpatient given coll care wrkbk0;1;-70=No; 1=Yes; -7=Refused
ccvideoIntegerRecommendedpatient given coll care video0;1;-70=No; 1=Yes; -7=Refused
siteString100RecommendedSiteStudy Sitesite_id, site_uid, siteid
ethnicityString30RecommendedEthnicity of participant
Hispanic or Latino; Not Hispanic or Latino; Unknown
studyString100RecommendedStudystudyid
visitString50RecommendedVisit nameCharacter description of each type of visitint1, interval, visit_name
completedIntegerRecommendedChecks if form is completed0::20=No; 1=Yes; 2=Yes, lostformcomp, frmcomp
subtrial_nameIntegerRecommendedName of subtrial1::31=Crossover; 2=Guanfacine; 3= Open Label MPH
ols_q1IntegerRecommendedEntering Open Label?0;10=No; 1=Yesenroldate_olstudy
ols_q2IntegerRecommendedReason for not entering1::101=Toxicity or side effects related to study medication 2=Medical reason unrelated to study medication 3=Termination by principal investigator because of non medical reasons 4=Failed to return to clinic 5=Declined study participation 6 = Moved from area (current or pending) 7 = Death (Complete Serious Adverse Events Form) 8 = Subject no longer eligible to participate. 9 = School unable/no longer willing to participate 10 = Otherenr04b
incl01IntegerRecommendedParents provide written consent0;10=No; 1=Yes
incl02IntegerRecommendedAge 4 years 6 months to 14 years of age inclusive0;10=No; 1=Yes
incl03IntegerRecommendedDiagnosis of PDD/Aspergers/Autism0::40=No; 1=Yes; 2=Current; 3=In partial remission; 4= Past
incl04IntegerRecommendedMed free CGI for PDD >= 40;1;-7;-90=No; 1=Yes; -7=refused; -9=unknown
incl05IntegerRecommendedMeet parent and teacher SNAP-IV criteria0;1;-7;-90=No; 1=Yes; -7=refused; -9=unknown
incl06IntegerRecommendedMental age >= 18 months0;10=No; 1=Yes
excl01IntegerRecommendedMental age < 18 months0;10=No; 1=Yes
excl02IntegerRecommendedDSM diagnosis requiring pharmacotherapy0;10=No; 1=Yes
excl03IntegerRecommendedSignificant medical condition0;1;-7;-90=No; 1=Yes; -7=refused; -9=unknown
excl04IntegerRecommendedDiastolic BP out of range0;10=No; 1=Yes
excl05IntegerRecommendedConcurrent treatment with another psychotropic medication within one to three weeks of baseline0;10=No; 1=Yes
excl06IntegerRecommendedSubject weighs less than 16 kg0;1;-7;-90=No; 1=Yes; -7=refused; -9=unknown
excl07IntegerRecommendedHypersensitive to Guanfacine0;1;-7;-90=No; 1=Yes; -7=refused; -9=unknown
excl08IntegerRecommendedExclusion criteria exception used for this subject ?0;1;-7;-90=No; 1=Yes; -7=refused; -9=unknown
enrollnIntegerRecommendedWas subject enrolled0;10=No; 1=Yes
enr_d1IntegerRecommendedDid Subj. meet Inclu./Exclu.?0;10=No; 1=Yes
enr_d2IntegerRecommendedDate of case review in days from the Guanfacine enrollment date (ENR_D2 = Date of case review - Guanfacine enrollment date)
guan_01IntegerRecommendedPresence of a chronic tic disorder0;10=No; 1=Yes
guan_02IntegerRecommendedHistory of MPH Non-Response0;10=No; 1=Yes
guan_03IntegerRecommendedMPH Non-Responder in MPH arm0;10=No; 1=Yes
guan_04IntegerRecommendedEntered MPH Arm but did not tolerate or had adverse reaction0;10=No; 1=Yes
reas01IntegerRecommendedParent refused child take medication0;10=No; 1=Yesq01
reas02IntegerRecommendedParent declined other reason0;10=No; 1=Yesq02
reas03IntegerRecommendedSubject refused to take medication0;10=No; 1=Yesq03
reas04IntegerRecommendedSubject refused other reason0;10=No; 1=Yesq04
reas05IntegerRecommendedFailed to return to clinic0;10=No; 1=Yesq05
reas06IntegerRecommendedImproved prior to randomization0;10=No; 1=Yesq06
reas07IntegerRecommendedSevere family problems preclude0;10=No; 1=Yesq07
reas08IntegerRecommendedFailed inclusion criteria0;10=No; 1=Yesq08
reas09IntegerRecommendedMet exclusion criteria0;10=No; 1=Yesq09
reas10IntegerRecommendedOther reason0;1; -90=No; 1=Yes; -9=NAq10
enrl_ordIntegerRecommendedOrder of Enrollment - The first subject enrolled in the Guanfacine Trial (i.e., the earliest enrollment date) has ENRL_ORD = 1, the second subject enrolled has ENRL_ORD = 2, the third has ENRL_ORD = 3, etc. Subjects enrolled on the same day are given the same number.Derived variable, not on CRF
crossdayIntegerRecommendedDays since MPH trial randomization (CROSSDAY = Guanfacine Enrollment Date - MPH Randomization Date)Derived variable, not on CRF Only applicable to those subjects that participated in both the Randomized MPH Trial and the Guanfacine Trial. Data are blank for all other subjects.
session_idString20Recommendedsession ID/screening IDscreeningid
version_formString100RecommendedForm usedform_name
randrdyIntegerRecommendedIs subject ready for randomization?0;10=No; 1=Yes
ran004String10RecommendedRandomization number/codingrndnum
date_updatedDateRecommendedDate record updatededit_date
elgbsgnIntegerRecommendedSite PI signed off Eligibility Confirmation form0;10=No;1=Yes
daysconsIntegerRecommendeddays since consentcnsntdat
mpdatFloatRecommendeddays from enrollment
project_statusIntegerRecommendedCurrent status in project1::151=Evaluation in progress; 2=Refused consent; 3=Ineligible/excluded; 4=Active stage 1; 5=Active stage 2; 6=Active HC control; 7=Completed HC control; 8=Stage 1 complete terminal; 9=Stage 2 complete; 10=Abnormal termination; 11=Withdrew consent; 12=In washout; 13=Dropped out/non compliant; 14=Project Completed; 15=Screened Onlystatus
enr04aIntegerRecommendedCould subject be located0;11=Yes; 0=No
sitedatasource_1IntegerRecommendedSource of Data: Site0;1; -888; -9990=False; 1=True; -888=Not Applicable; -999=Missing;infosrcr
sitedatasource_phoneIntegerRecommendedSource of Data: Telephone0;1; -888; -9990=False; 1=True; -888=Not Applicable; -999=Missing;infosrct
sitedatasource_physicianIntegerRecommendedSource of Data: Physician0;1; -888; -9990=False; 1=True; -888=Not Applicable; -999=Missing;infosrcp
ssq2aIntegerRecommendedAny anti-convulsant?0;10 = No; 1 = Yesanticonv, takedrug
med_sequenceIntegerRecommendedMed Sequence numberseq
ci_enrolledIntegerRecommendedParticipant enrolled0;10=No; 1=Yesenrolled
treatment_nameString200Recommendedtreatment nametreatgrp
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: enrol01 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.