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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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Discontinuation Form

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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/projectbid, case_id
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.bslage
genderString20RequiredSex of the subjectM;FM = Male; F = Female
siteString100RecommendedSiteStudy Sitesite_no
trt_grpString10RecommendedTreatment Group Assignment1;1AO;1CT;2;31=Group 1 first 8 weeks; 1AO=Group 1 8 week add on; 1CT=Group 1 8 week cross taper; 2=Group 2; 3=Group 3
days_baselineIntegerRecommendedDays since baselinebsldays
etypeString10RecommendedRating PeriodBSL;WK1;WK2;WK3;WK4;WK5;WK6;WK7;WK8;WK9;WK10;WK11;WK12;WK13;WK14;WK15;WK16BSL=Baseline; WK1-WK16=Weeks 1-16
respond_detail_oth_specString255RecommendedRespondent detailsinformnt
relationshipIntegerRecommendedRelationship of respondent to individual
1::84; -999
1 = Biological mom; 2 = Biological dad; 3 = Grandparent; 4 = Special education (sped) teacher; 5 = General education teacher; 6 = Occupational therapist; 7 = Speech and language therapist; 8 = Behavioral therapist; 9 = Paraprofessional; 10 = Aide; 11 = Principal; 12 = Administrator; 13 = Other; 14 = Content teacher; 15 = Parent center director; 16 = Self; 17=Adoptive mother; 18=Adoptive father; 19=Foster mother; 20 = Foster father; 21=Grandmother; 22=Grandfather; 23=Step-mother; 24 = Step-father; 25=Aunt; 26=Uncle; 27=Missing Data; 28=Both parents;31= Grandmother from mother side; 32= Grandfather from mother side; 33= Grandmother from father side; 34= Grandfather from father side; 36= Brother; 37= Sister; 38= Cousin; 39= female caregiver; 40=male caregiver; 41=Female child; 42=Male child; 43=Spouse/Mate; 44=Friend; 45=Parent; 46=Significant other; 47=Sibling; 48=Son/Daughter; 49=Son-in-law/Daughter-in law; 50=Other Relative; 51=Paid caregiver; 52=Friends; 90= Other, specify; -999= Missing; 53=Roommate; 54=Supervisor; 55=mother's boyfriend; 56=other parental figure; 57=Summary; 58=counselor ; 59 = other female relative; 60 = other male relative; 61 = non-relative ; ;62=Maternal Aunt; 63=Maternal Uncle; 64=Maternal Cousin; 65 = Paternal Aunt; 66=Paternal Uncle; 67=Paternal Cousin ;68=Biological/Adoptive Mother and Grandmother; 69=Biological/Adoptive Mother and Stepmother and Grandmother; 70=Biological/Adoptive Mother and Grandmother and Foster Father; 71=Biological/Adoptive Mother and Stepmother and Foster Mother; 72=Biological/Adoptive Mother and Foster Mother; 73=Biological/Adoptive Mother and Biological/Adoptive Father; 74=Biological/Adoptive Mother and Stepmother and Biological/Adoptive Father; 75=Biological/Adoptive Mother and Other; 76=Biological/Adoptive Mother and Stepmother and Stepfather; 77=Biological/Adoptive Mother and Stepfather; 78=Biological/Adoptive Mother and Grandfather; 79=Biological/Adoptive Mother and Stepmother and Foster Father; 80=Biological/Adoptive Mother and Stepmother; 81=Guardian, female; 82=Other female; 83=Guardian, male; 84=Other male; 85=Other/Grandparent/Nannyinfrmnt2
dfrsnIntegerRecommendedReason for discontinuation1::71=Hospitalization; 2=Pregnancy; 3=Onset of severe illness; 4=Worsening of symptoms; 5=Use of more than 10 doses of Chlorpromazine; 6=Weight/BMI increase; 7=Other
df_reasonString10RecommendedReason for discontinuation recordedHOSP;PREG;ILL;WORS;CHLR;WGT;CHNG;SIDE;GEOG;OTHRHOSP=Hospitalization; PREG=Pregnancy; ILL=Onset of severe illness; WORS=Worsening of symptoms; CHLR=Use of more than 10 doses of Chlorpromazine; WGT=Weight/BMI increase; CHNG=Changed mind; GEOG=Geographical relocation; OTHR=Other
df_commntString250RecommendedIf other-provide details
rtda1IntegerRecommendedWhat date was the assigned study treatment stopped?0::999rtda2_1
rtda2IntegerRecommendedDid patient successfully complete the protocol on the assigned treatment?0;11=Yes; 0=Nortda1_1
rtda3IntegerRecommendedWas study treatment discontinued for administrative reasons?0;11=Yes; 0=No;Note: This implies that both the patient and the clinical staff judge the assigned antipsychotic treatment to be a success (i.e. adequately effective, with tolerable or no side effects), and that treatment would have continued if not for the administrative reason independent of the study procedures.
visitString50RecommendedVisit nameCharacter description of each type of visit
fseqnoIntegerRecommendedSequence Number0::999The FSEQNO variable in the ADJ form has a special interpretation compared to other forms. For example, ADJ FSEQNO of '1' can be thought of as being '001', FSEQNO of '2' can be thought of as being '002', and FSEQNO of '3' can be thought of as being '003'. The first digit of FSEQNO relates to the corresponding ENF sequence number at that visit and the third digit relates to the specific adjudicator who completed the adjudication form.
version_formString100RecommendedForm usedvers
daysrzIntegerRecommendeddays since randomizationrtda0b
rtda1aIntegerRecommendedDid patient complete 24 weeks on the assigned anti-psychotic? (Y/N)0;10=No; 1=Yes
rtda2aIntegerRecommendedWhat date was the study anti-psychotic stopped? [days since randomization]0::365
rtda3aIntegerRecommendedWhat was the reason the study anti-psychotic was stopped? (choose the primary reason) A. Efficacy/Inadequate therapeutic effect: Positive symptoms, negative symptoms, mood symptoms, other. B. Unacceptable side effects: Weight, lipids, glucose, EPS, TD, akathisia/activation, sedation, insomnia, agitation, sexual side effects, nausea, other. C. Patient refusal : Does not see need for or benefit from antipsychotic, no longer wants to participate in study. D. Patient dropped out, no information available E. Death/Illness F. Administrative1;3;4;6;10;12;13;16;17;18;19;21;99901=Positive Symptoms; 03=Mood Symptoms; 04=Other efficacy/inadequate therapeutic effect (specify); 06=Lipids; 10=Akathisia/activation; 12=Insomnia; 13=Agitation; 16=Other unacceptable side effects (specify); 17=Does not see need for or benefit from antipsychotic treatment; 18=No longer wants to participate in study (but will still take meds); 19=Patient dropped out, no information available; 21=Administrative (specify); 999= Legitimately skipped
rtda3_1IntegerRecommendedWhat was the primary reason the study treatment was stopped?01::19; 99901=Weight; 02=Diarrhea; 03=Nausea; 04=Vomiting; 05=Abdominal Discomfort; 06=Headache; 07=Weakness; 08=Muscle Pain; 09=Alcohol Use; 10=Lipids; 11=Glucose; 12=GGT; 13=Other; 14=Patient Refusal:Does not see need for or benefit from study medication; 15=Patient Refusal: Unacceptable side effects; 16=Patient Refusal: No longer wants to participate in study; 17=Patient dropped out, no information available; 18=Death/Illness; 19=Administrative; 999=Legitimately skipped
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: discont01 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.