NIMH Data Archive - Data Dictionary: Data Structure

Title:

After Study Knowledge Questionnaire

Short Name:

askq

Version:

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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
interview_date	Date		Required	Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY		Required field
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.
sex	String	20	Required	Sex of the subject	M;F	M = Male; F = Female	gender
site	String	101	Recommended	Site		Study Site
study	String	100	Recommended	Study
daysrz	Integer		Recommended	days since randomization
visit	String	50	Recommended	Visit name
completed	Integer		Recommended	Checks if completed	0::3	0=No; 1=Yes; 2=Yes, lost; 3=Unverified
ci_enrolled	Integer		Recommended	Participant enrolled	0;1	0=No; 1=Yes
relationship	Integer		Recommended	Relationship of respondent to individual	1::93;-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; 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/Nanny; 86 = Mother, Father, Guardian; 87 = Daughter, son, grandchild; 88 = Professional (e.g., social worker, nurse, therapist, psychiatrist, or group home staff); 90=Other; -999=Missing; 89 = Biological parent; 91 = Stepparent; 92 = Adoptive parent; 93 = Foster parent
bkgrnd_education	String	1,020	Recommended	Subject's education (school and preschool)
afterstdy_q05	Integer		Recommended	Main goal of doctors	1::5;9	1 = To find out if a certain medication helps children with autism; 2 = To give free care to children with autism; 3 = To give a medication that is available only in research studies.; 4 = To see if Parent Management Training will produce gains over and above those seen with [medication]; 5 = To find out if medication only helps children with autism
stpnm1	String	250	Recommended	Study med name1
afterstdy_q07	Integer		Recommended	Informed before child received med.	1::4;9	1 = I was informed by the study doctor(s) and/or other staff of what this study is about and my questions were adequately answered; 2 = There was no information available on the study; 3 = The study doctor(s) or other staff didn't inform me, but I found information elsewhere; 4 = I was told that the purpose needed to be a secret for the study to "work right
afterstdy_q08	Integer		Recommended	Permission before child received med.	1::4;9	1 = Nobody asked me permission to start the study; 2 = I gave only verbal permission to the study staff to enter him/her into the study; 3 = I gave written permission to the study staff to enter him/her into the study; 4 =The study staff members said that permission was assumed, because I would not have to come ...
afterstdy_q09	Integer		Recommended	In this study...	1::4;9	1 = Some children were given "real" medication and other children "inactive" medication (also called placebo) for 2 months; 2 = All children were given "real" medication for 2 months; 3 = All children were given "inactive" medication for 2 months before they could receive "real medication" ; 4 = no medication is involved
afterstdy_q10	Integer		Recommended	...the chance of being assigned placebo	1::4;9	1 = 0%; 2 = 50%; 3 = 75%; 4 = 100%
afterstdy_q11	Integer		Recommended	When the study started...	1::4;9	1 = Some children were given "real" medication and other children "inactive" medication (also called placebo) for 2 months; 2 = All children were given "real" medication for 2 months; 3 = All children were given "inactive" medication for 2 months before they could receive "real medication" ; 4 = no medication is involved
afterstdy_q12	Integer		Recommended	Before start, risks/benefits...	1::4;9	1 = I understood that there were only advantages and benefits, but no risks at all, in participation in the study; 2 = I understood that there were both possible advantages (benefits) and risks, and the doctors told me which the main risks were.; 3 = I was not informed of any benefits or risks possibly associated with this study; 4 = I was told that there were no possible benefits for my child
afterstdy_q13	Integer		Recommended	Side effects	1::5;9	1 = Dizziness, abnormal movements of the head or neck, weight gain; 2 = Hair loss, anemia, weight loss; 3 = Diarrhea, vomiting, and heart problems; 4 = Ringing in the ears and coldness in the extremitites (hands and feet); 5 = Craving for salt, reduced appetite, and sweating
afterstdy_q14	Integer		Recommended	At the time I agreed, study med	1::4;9	1 = I was informed of the possible alternatives for treatment; 2 = I understood that there were no alternatives besides the study; 3 = The study medicine was not available yet outside the study; 4 = Parent Management Training has already been proven effective to cure autism
afterstdy_q15	Integer		Recommended	After consent, drop out was...	1::4;9	1 = It was not possible for my child to drop out of the study before it was completed, even if I wanted him to stop; 2 = I could have taken my child off the study at any time, if I wanted, even if the study was yet not finished; 3 = My child could have stopped the study but only with the permission of the study doctors; 4 = Leaving the study would have resulted in loss of all services at this Medical Center
afterstdy_q16	Integer		Recommended	If dropout, treatment would...	1::9	1 = My child would have to wait for medical care until the study is completed; 2 = My child could not have been treated with the type of medication that is given in this study; 3 = My child would have continued treatment with another doctor; 4 = My child would have to wait for Parent Management Training until the study is completed; 5 = My child could not receive the treatments that are given in this study; 6 = My child could have received these treatments with other therapists in the community; 7 = Parent Management Training would be made available free
afterstdy_q17	Integer		Recommended	Study treatment assignment	1::5;9	1 = Randomly (that is by the tossing of a coin); 2 = By the child; 3 = Based on the individual needs of each child to ensure that each child received the best possible treatment for his/her condition; 4 = Based on the child's age; 5 = Based on the Treatment Preference Form that I completed at the beginning
relation_specify	String	20	Recommended	Relation Other Specify
visnum	Float		Recommended	Numeric Visit Number		-1.5 = Pre-Screening; -1 = Screening; 0 = Baseline; ## = Visit ## (from 1 to 10); Whole numbers = standard monthly visits; #.001 - #.009 = Unscheduled; #.1 = End of Phase 1; #.2 = End of Phase 2; #.3 = End of Phase 3; #.4 = End of Open Choice Phase; #.5 = End of Study; #.6 = Genetic Analysis; 1000=all visits
ques6	Integer		Recommended	When I agreed to my child's participation in this study, the chance of his/her being assigned to receive only medication (no Parent Management Training) for the 6-month duration of the study was:	1::4;9	1 = 0%; 2 = 33%; 3 = 50%; 4 = 100%
ques10	Integer		Recommended	A possible risk or disadvantage of the Parent Management Training is:	1::4;9	1 = that it would result in punishment to my child; 2 = that it would require a lot of time and effort; 3 = that it would involve spoiling my child with bribes; 4 = I would have to spend a lot of money to make it work
ques15	Integer		Recommended	Before I stated in this study, I knew that, If I were assisgned to the medication + therapy group:	1::4;9	1 = his/her teacher would have to give rating every two weeks for my child to stay in the study; 2 = I would have homework to do most weeks; 3 = The behavior therapist would visit out home whenever we needed him/her; 4 = Even if the medicine does not help, my child would have to continue it

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)
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Distribution for DataStructure: askq01 and Element:

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