Genetics Data Harmonization

NIDA developed a series of core elements for assessing and harmonizing demographic information and substance use history for genetic studies. These questions were collated from a variety of current, validated questionnaires that align with domains that are of interest to NIDA. The primary question of these domains is most representative of the domain. Secondary questions are also listed, along with their corresponding instruments. Clicking on a domain will open a page to the domain question and provide a choice of instruments. These instruments can be used to capture data relevant for that question. In some cases, several instruments are appropriate; in other cases, there are one or none.

NIDA strongly encourages all applicants to discuss how these core elements are addressed in their data sharing plan by either assessing them directly or indirectly by suggested proxy measures.

NGC Domain #1: Largest number of a particular substance used in 24 hour period (Quantity)

Question: In your lifetime, what is the largest dose of [DRUG] you have ever had in a 24 hour period?

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Secondary Questions:

Question: During the past year, how much [DRUG] did you use on an average day, in dollars/pills/bags/grams/cups?

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Question: During that period of heavy use, how many times did you use (DRUG) on an average day? Past 1 year? Past 5 years? Past 10 years?

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NGC Domain #2: Number of drugs used daily

Question: Think specifically about the past 30 days, from (DATEFILL) up to and including today. During the past 30 days, on how many days did you use (DRUG)?

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Secondary Questions:

Question: Tobacco
How many cigarettes per day do/did you smoke?

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Question: Other Substances
Think about the time when you were using (DRUG) the most. During that period, how many days per month did you use (DRUG)?

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Question: Other Substances
In a typical day, when you drink, how many alcoholic drinks do you have?

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NGC Domain #3: Duration of drug use

Question: How old were you when you took your first real drink of alcohol (not a sip, or at a religious ceremony)?

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Secondary Questions:

Question: At what age did you begin to drink regularly; that is drinking at least once a month for 6 months or more?

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Question: Other Substances
How long have you used [DRUG] at your current frequency?

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Question: Other Substances
When using the most heavily, how many days per month did you use [DRUG]?

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Question: Other Substances
When using regularly, how many days per week did you use [DRUG]?

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Question: Other Substances
In the last 12 months, how many times did you use [DRUG]?

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Question: Other Substances
How old were you the first/last time you used cocaine at least once a week for a month or more? and "How old were you the first/last time you used (opiate) at least once a week for a month or more?" Also asks in the "multi-drug" section asks "How many times in your life have you used (DRUG)?" and "How old were you the first/last time you used (DRUG)?"

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NGC Domain #4: Early drug experience (initial liking)

Question: In the period shortly after you used [DRUG] did it make you feel (relaxed, very good, energetic, sociable, creative)?

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  • Lyons Preferred Substance Assessment

Secondary Questions:

Question: Rate your experiences of first use of [DRUG]

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Question: Tobacco
Rate their initial smoking experiences using the following categories:

  1. pleasurable sensations (overall),
  2. unpleasant sensations (overall),
  3. pleasurable rush of "buzz",
  4. relaxation,
  5. nausea,
  6. cough, and
  7. dizziness on a scale of 1 (none) to 4 (intense)

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NGC Domain #5: Total number of symptoms

Question: Asks about all DSM-III-R and DSM-IV SUD symptoms.

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Secondary Questions:

Question: How soon after you first wake up do you smoke your first cigarette?

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Question: Asks about DSMIII-R and DSMIV symptoms and records them on separate diagnostic system tally sheets so that respondents can report if there was a "clustering" of symptoms in the given timeframe for the system being used.

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NGC Domain #6: Environmental variables

Question: Many assessments could be seen as addressing environmental variables, need more specificity to list questions.

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Secondary Questions:

Question: Before you were 15, was there a time when you did not live with your biological mother/father for at least 6 months?

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Question: At what ages were you living apart from your biological mother/father?

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Question: Have you ever lived in foster care?

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Question: Other assessments? We have information on sexual behavior, sleeping habits, religious beliefs, activities, gambling, etc. on the computerized questionnaire ? the questions are too numerous to list.

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Question: How many people different had the main responsibility for caring for you up to age 18

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Question: How would you describe the quality of your relationship with your main caregiver (excellent, very good, good, fair, poor)?

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Question: How did your mother/father figure punish you?

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Question: Have you ever had any emotional problems or times that stand out as particularly troubling or upsetting during your life?

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Question: Frightening or horrible experiences?

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Question: Did you ever experience or witness a violent crime, like a shooting or a rape, by age 13?, If yes, Did this happen more than once by age 13?

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Question: Were you ever the victim of a violent crime?

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Question: Now I'm going to ask you about the use of drugs or alcohol in the household where you grew up, by the time you were 13 years old. Were you ever aware of adults in your household drinking enough to get drunk, or using drugs or alcohol by the time you were 13?

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Question: Describe your work environment

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Question: Was your birth or early development abnormal in any way?

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Question: Have you taken any prescription medications for 2 weeks or longer?

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Question: Have you ever become hooked or dependent on prescription drugs or take much more of it than was prescribed?

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Question: Did you run away from home overnight?

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Question: Describe your childhood relationships

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Question: Have you ever been anxious, worried, nervous, or "on edge" more days than not for at least 6 months? For example, worrying about possible harm to a loved one who was not in danger, or worrying about finances for no good reason?

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Question: Some people have a fear of being in certain places or situations where they feel it would be difficult to leave easily. They are worried that they could not escape or get help if they suddenly became panicky. Some situations like this include being alone away from home; being in a crowd; being in a place where there was a long distance between exits, like in a tunnel or on a bridge; traveling in a bus, car, or train; or being in an elevator. Have you ever had a period of time when you had a fear like that (that you might become panicky and wouldn't be able to leave easily if that happened)?

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Question: Have you ever gambled for money?

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Question: Were there gangs in your school?

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Question: Questions to determine childhood experiences and relationships

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NGC Domain #7: Age of onset

Question: How old were you when you first/last used [DRUG]?

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Secondary Questions:

Question: At what age did you begin using [DRUG] regularly?

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Question: How old were you when you drank caffeinated beverages the most?

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Question: How old were you the first/last time you were using [DRUG] most heavily?

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Question: How old were you the first time you brought up any problem you had with drinking?

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Question: Tobacco
How old were you the first time you smoked part or all of a cigarette?

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Question: Tobacco
How old were you when you first started smoking cigarettes every day?

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Question: Tobacco
How old were you when you first started smoking cigarettes fairly regularly?

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NGC Domain #8: Was drug available to you

Question: Have you stolen things/stolen money/sold drugs/traded sex/get salary advance in order to pay for [DRUG]?

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Secondary Questions:

Question: Have you sometimes avoided doing things or going places because there wouldn't be any [DRUG] available?

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Question: During this time when you used most heavily, how often would you check to make sure that you had [DRUG] around the house?

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Question: Did you ever spend a lot of time thinking about drinking or making sure alcohol was available?

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Question: Have you frequently made special trips to a [SOURCE], gone our of your way to get [DRUG], or planned ahead so you wouldn't run out of [DRUG]?

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Question: What was the earliest age when you had access to alcohol yourself?; What was the earliest age when you had access to cocaine yourself?; What was the earliest age when you had access to heroin yourself?

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NGC Domain #9: Would you take the drug if it were available to you

Question: Which form of [DRUG] have you used?

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NGC Domain #10: Withdrawal, repeated difficulty with cessation/quitting

Question: Have you ever tried to quit or cut down on using tobacco

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Secondary Questions:

Question: When you decided to quit or cut down on smoking/using tobacco were you always able to do so for at least one month?

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Question: Was there more than one time when you couldn't quit or cut down for at least one month?

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Question: Asks about tobacco withdrawal symptoms

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Question: Which cigarette would you most hate to give up? (morning, or after that one?)

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Question: Alcohol
Have you ever tried to quit or cut down on using alcohol?

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Question: Alcohol
When you decided to quit or cut down on drinking were you always able to do so for at least one month?

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Question: Alcohol
Was there more than one time when you couldn't quit or cut down for at least one month?

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Question: Alcohol
Asks about alcohol withdrawal symptoms

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Question: Alcohol
SSADDA asks about alcohol withdrawal symptoms

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Question: Other Substances
Have you wanted to quit or cut down on (DRUG) or tried to quit or cut down but were unable to do so for at least a month?

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Question: Other Substances
People have told us about a number of withdrawal symptoms they have experienced within the first few hours or days of not using drugs. During the first few hours or days of not using (DRUG) did you experience (READ WITHDRAWAL SYMPTOMS)?

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Question: Other Substances
Asks specifically about cocaine withdrawal symptoms, opiate withdrawal symptoms, and in the multi-drug section asks about withdrawal symptoms for up to four other drugs

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Question: Other Substances
What is the longest time you have gone without using [DRUG]?

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Question: Other Substances
What is the longest time you have gone without using since using regularly?

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Question: Other Substances
Are you always able to stop using when you want to?

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Question: Other Substances
Have you ever gone to anyone for help for a drug problem?

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Question: Other Substances
Have you often wanted to quit or cut down on [DRUG]?

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Question: Other Substances
In situations where you couldn't use, did you ever have such a strong desire for it that you couldn't think of anything else?

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Question: Other Substances
Did you ever use alcohol or any other drug to make yourself feel better when coming down from the effects of cocaine?

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Question: Other Substances
Did you ever use [DRUG] to keep from having withdrawal symptoms or make them go away?

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Question: Other Substances
How many times in your life have you seriously tried to stop using [DRUG]?

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Question: Other Substances
How depressed did you get when you tried to quit?

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Question: Other Substances
Have you ever brought up any problem you might have had with [DRUG] with any professional?

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Question: Other Substances
Have you ever attended a self-help group (like AA) for your drug problem?

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Question: Other Substances
Have you ever been treated for a problem with [DRUG] (outpatient, inpatient, other)?

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Question: Other Substances
Have you ever been involved in a treatment program specifically related to drug use?

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NGC Domain #11: Family history information

Question: The Family History Assessment Module (FHAM) was designed to systematically question an informant about the presence of psychiatric illness in relatives. The method involves the following:

  • Draw the pedigree: The structure of the family pedigree is drawn and reviewed with each informant. Pedigree information obtained from prior screenings and proband interviews is not presented to affected or non-affected family members to ensure confidentiality. It is important to have the pedigree drawing be the first assessment item to verify the informant?s relationship to the proband (self, full sibling, biological parent, etc).
  • Ask the screener questions: Psychiatric screening questions are asked about all relatives in the pedigree. Questions span a wide range of problems including substance abuse, mood disorders, schizophrenia, and antisocial personality disorder. There is also an ?unspecified psychiatric disorder? category, which captures individuals with problems that do not fit into any of the other categories. Information on relatives is also obtained regarding psychiatric hospitalizations, counseling, and/or suicide attempts.
  • Administer the Individual Assessment Module (IAM): Based on responses to the screener questions, an IAM is completed for each implicated individual if they are a first degree relative of the proband. The symptom checklists in the IAM are used for DSM-IV diagnoses. The alcohol and drug sections ask for onset and recency of symptoms and also inquire about any known abstinent periods.
  • Administer Tobacco family history assessment module: The tobacco FHAM gives a brief smoking history of each first degree relative of the informant. Information is obtained regarding frequency and quantity of lifetime tobacco use.

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  • FHAM

Secondary Questions:

Question: Have you had a relative suffer from a drug-related disease?

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Question: Have any of your relatives attempted/committed suicide?

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Question: Does your biological mother/father/spouse/twin ever have a drink of alcohol?

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Question: Were you adopted?

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Question: Medical History

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Question: Alcohol
Did drinking ever cause any of the family members on your list to have problems with health, family, job or police, or other problems?

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Question: Alcohol
Did you ever feel that any of the family members on your list was an excessive drinker?

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Question: Alcohol
Because of drinking, did your (RELATIVE) ever have problems such as:

  • Using alcohol in larger amounts over a period than s/he intended?
  • Being unable to stop or cut down on use of alcohol?
  • Spending a lot of time using alcohol or recovering from other effects?
  • Being unable to work, go to school or take care of household responsibilities?
  • Being drunk when s/he could get hurt?
  • Having accidental injuries?
  • Reducing or giving up on important activities?
  • Objections from family or friends, or at work or school?
  • Having a legal problem (DUI arrest)?
  • Having blackouts?
  • Going on binges or benders, drinking 2 or more days without sobering up?
  • Physical health problems (liver disease, pancreatitis)?
  • Emotional or psychological problems (uninterested, depressed, suspicious/paranoid, having strange ideas)?
  • Withdrawal symptoms (shakes, seizures/convulsions, DTs)?
  • Needing to drink a great deal more in order to get an effect, or finding that s/he could no longer get drunk on that amount s/he used to drink?
  • Any kind of treatment or hospitalization?
  • Making rules to control drinking (never drinking alone, never drinking before 5 p.m., drinking before breakfast, or drinking non-beverage alcohol like vanilla extract, cough syrup, or rubbing alcohol)?
  • Trouble at work or school getting into fights while drinking?
  • Losing friends because of his/her drinking, considering him/herself an excessive drinker, or feeling guilty about his/her drinking?

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Question: Other Substances
Did using drugs ever cause any of the family members on your list to have problems with health, family, job or police, or other problems?

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Question: Other Substances
Did you ever feel that any of the family members on your list had a problem with drugs?

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Question: Other Substances
This is a list of some drugs people use. Which of these drugs has your (RELATIVE) had problems with?

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Question: Other Substances
Because of his/her drug use, did your (RELATIVE) ever have problems such as:

  • Using drugs in larger amounts over a longer period than s/he intended?
  • Being able to stop or cut down on use of drugs?
  • Spending a lot of time using drugs or recovering from their effects?
  • Being unable to work, go to school or take care of household responsibilities?
  • Being high from drugs when s/he could get hurt?
  • Having accidental injuries?
  • Reducing or giving up important activities?
  • Problems with family or friends, or at work or school?
  • Having legal problems (arrests for possessing, selling or stealing drugs)?
  • Physical health problems (hepatitis, overdose)?
  • Emotional or psychological problems (uninterested, depressed, suspicious/paranoid, having strange ideas)?
  • Withdrawal symptoms?
  • Needing larger amounts of drugs to get an effect, or finding that s/he could no longer get high on the amount s/he used to use?
  • Any kind of treatment of hospitalization?

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NGC Domain #12: Other symptoms (e.g. Depression)

Question: Looking back on your life, have you ever had a time when you were feeling depressed or down for at least 7 days in a row?

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Secondary Questions:

Question: Did your parents ever take you to anyone like a doctor, a social worker, or another professional becaause you were having (childhood) problems? Did you ever take any medication for these problems?

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Question: Did you ever hurt yourself on purpose, for example, by cutting or burning yourself, or tried killing yourself?

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Question: Questions for screening depression

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Question: Questions for screening mania

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Question: Questions about unusual experiences, not reality, hallucinations, delusions, abnormal behavior

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Question: Panic disorder

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Question: ADD

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Question: Conduct disorder

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Question: Paranoia

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NGC Domain #13: Other Factors: Maternal Smoking, How were your samples ascertained

Maternal Smoking

No standard questions at this time. If you have suggestions, please email: Jonathan Pollock, Ph.D.

How were your samples ascertained

No standard questions at this time. If you have suggestions, please email: Jonathan Pollock, Ph.D.