|
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_age |
Integer |
|
Required |
Age in months at the time of the interview/test/sampling/imaging. |
0::1440
|
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.
|
|
|
interview_date |
Date |
|
Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
|
|
sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
gender |
Query
|
pcpkps_01 |
Integer |
|
Recommended |
Method to identify childern under 3 years of age "at risk" for developmental problems: Clinical assessment without the use of a screening instrument/checklist |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_02 |
Integer |
|
Recommended |
Method to identify childern under 3 years of age "at risk" for developmental problems: Informal checklist filled out by parents |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_03 |
Integer |
|
Recommended |
Method to identify childern under 3 years of age "at risk" for developmental problems: Informal checklist completed by staff or provider |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_04 |
Integer |
|
Recommended |
Method to identify childern under 3 years of age "at risk" for developmental problems: Formal screening using a validated tool such as the PEDS or Ages and Stages Questionnaire/ASQ |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
|
pcpkps_05 |
String |
50
|
Recommended |
Specify Formal Screening validation tool |
|
|
|
Query
|
pcpkps_06 |
Integer |
|
Recommended |
Method to identify childern under 3 years of age "at risk" for developmental problems: Other method for monitoring development |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
|
pcpkps_07 |
String |
50
|
Recommended |
Specify other method for monitoring development |
|
|
|
Query
|
pcpkps_08 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools Routinely for all children at well child visits |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_09 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools Months for all children at well child visits |
9;18;24;30;36
|
|
|
Query
|
pcpkps_10 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools Routinely for children who have older siblings with autism |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_11 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools Months for children who have older siblings with autism |
9;18;24;30;36
|
|
|
Query
|
pcpkps_12 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools When parents raise concerns about development |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_13 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools When you have concerns about development |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_14 |
Integer |
|
Recommended |
Use stardardized, validated developmental screening tools Other |
0;1
|
0=No; 1=Yes
|
|
|
pcpkps_15 |
String |
50
|
Recommended |
Use stardardized, validated developmental screening tools Other Specified |
|
|
|
Query
|
pcpkps_16 |
Integer |
|
Recommended |
How often do you use a validated autism-specific screening tool (e.g., M-CHAT) |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
|
pcpkps_17 |
String |
50
|
Recommended |
Specify autism-specific screening tool |
|
|
|
Query
|
pcpkps_18 |
Integer |
|
Recommended |
Use autism-specific screening tool: Routinely for all children at well child visits |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_19 |
Integer |
|
Recommended |
Use autism-specific screening tool: Months for all children at well child visits |
9;18;24;30;36
|
|
|
Query
|
pcpkps_20 |
Integer |
|
Recommended |
Use autism-specific screening tool: When parents raise concerns about autism |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_21 |
Integer |
|
Recommended |
Use autism-specific screening tool: When you have concerns about autism |
0;1
|
0=No; 1=Yes
|
|
Query
|
pcpkps_22 |
Integer |
|
Recommended |
Use autism-specific screening tool: Other |
0;1
|
0=No; 1=Yes
|
|
|
pcpkps_23 |
String |
50
|
Recommended |
Use autism-specific screening tool: Specify Other |
|
|
|
Query
|
pcpkps_24 |
Float |
|
Recommended |
Percent of your 18-month-old patients receive the M-CHAT |
|
|
|
Query
|
pcpkps_25 |
Integer |
|
Recommended |
How often do your 18-month-old patients who screen positive on the M-CHAT receive the M-CHAT follow-up interview |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_26 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 18 monthshow often would you Immediately refer the child for a diagnostic evaluation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_27 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 24 monthshow often would you Immediately refer the child for a diagnostic evaluation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_28 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 30 monthshow often would you Immediately refer the child for a diagnostic evaluation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_29 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 18 monthshow often would you Immediately refer the child to the state-funded Early Intervention program in your county? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_30 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 24 monthshow often would you Immediately refer the child to the state-funded Early Intervention program in your county? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_31 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 30 monthshow often would you Immediately refer the child to the state-funded Early Intervention program in your county? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_32 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 18 monthshow often would you Immediately refer the child to another health care provider for consultation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_33 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 24 monthshow often would you Immediately refer the child to another health care provider for consultation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_34 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 30 monthshow often would you Immediately refer the child to another health care provider for consultation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_35 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 18 monthshow often would you Immediately refer the child to another health care provider for treatment? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_36 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 24 monthshow often would you Immediately refer the child to another health care provider for treatment? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_37 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 30 monthshow often would you Immediately refer the child to another health care provider for treatment? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_38 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 18 monthshow often would you Wait and repeat the screening at a subsequent visit? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_39 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 24 monthshow often would you Wait and repeat the screening at a subsequent visit? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_40 |
Integer |
|
Recommended |
If a child screened positive of the M-CHAT at 30 monthshow often would you Wait and repeat the screening at a subsequent visit? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_41 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Cost to practice |
0::2;999
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_42 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of familiarity with screening tools |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_43 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of time |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_44 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of adequate reimbursement |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_45 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of staff |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_46 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of adequate sensitivity/specificity of screening tools |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_47 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of comfort talking to parents about autism concerns |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_48 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Lack of community resources for diagnosis and/or treatment |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
Query
|
pcpkps_49 |
Integer |
|
Recommended |
Implementing validated autism-specific screening tool barrier : Family language and/or cultural differences |
|
0=Not a barrier; 1=Moderate barrier; 2= Major barrier; 999=N/A
|
|
|
pcpkps_50 |
String |
50
|
Recommended |
Implementing validated autism-specific screening tool barrier : Specify Family language and/or cultural differences |
|
|
|
Query
|
pcpkps_51 |
Integer |
|
Recommended |
What is the average age you would become concerned about the presence of autism? |
|
|
|
Query
|
pcpkps_52 |
Integer |
|
Recommended |
What is the youngest age you would become concerned about the presence of autism? |
|
|
|
Query
|
pcpkps_53 |
Integer |
|
Recommended |
What is the average age you would initiate a conversation about autism concerns with a parent? |
|
|
|
Query
|
pcpkps_54 |
Integer |
|
Recommended |
What is the youngest age you would initiate a conversation about autism concerns with a parent? |
|
|
|
Query
|
pcpkps_55 |
Integer |
|
Recommended |
What is the average age you would refer a child for a diagnostic evaluation for autism? |
|
|
|
Query
|
pcpkps_56 |
Integer |
|
Recommended |
What is the youngest age you would refer a child for a diagnostic evaluation for autism? |
|
|
|
Query
|
pcpkps_57 |
Integer |
|
Recommended |
How often do you refer children under age 3 who are showing signs of autism for a diagnostic evaluation? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
Query
|
pcpkps_58 |
Integer |
|
Recommended |
How often do you refer children under age 3 who are showing signs of autism to the state-funded Early Intervention Program in your county? |
0::2;999
|
0=Rarely/Never; 1=Sometimes; 2=Always/Almost Always; 999=N/A
|
|
|
pcpkps_59 |
String |
50
|
Recommended |
Spcify state-funded early intervention program |
|
|
|
Query
|
pcpkps_60 |
Integer |
|
Recommended |
When referrals are made, how often do you receive feedback form the Early Intervention Program |
0::4;999
|
0=less than 25 percent; 1=25-49 percent; 2=50-74 percent; 3=75-99 percent; 4=100 percent; 999=N/A
|
|
Query
|
pcpkps_61 |
Integer |
|
Recommended |
How knowledgeable do you feel about recognizing the signs of autism in children under 3 years old? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_62 |
Integer |
|
Recommended |
How knowledgeable do you feel about selecting and using autism screening tools for children under 3 years old? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_63 |
Integer |
|
Recommended |
How comfortable do you feel discussing autism concerns with parents for children under 3 years old? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_64 |
Integer |
|
Recommended |
How comfortable do you feel making an autism diagnosis in children under 3 years old? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_65 |
Integer |
|
Recommended |
How knowledgeable do you feel about the diagnostic assessment resources in your community for children under 3 years old? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_66 |
Integer |
|
Recommended |
How knowledgeable do you feel about the Early Intervention resources in your community for children under 3 years old? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_67 |
Integer |
|
Recommended |
How important do you feel it is to provide autism-specialized intervention to children under age 3 who demonstrate signs of autism? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_68 |
Integer |
|
Recommended |
How important do you feel it is to provide autism-specialized intervention to children under age 3 with diagnosed autism? |
1::4;999
|
1=Not at all; 4=Extremely; 999=N/A
|
|
Query
|
pcpkps_69 |
Integer |
|
Recommended |
Did child receive development screen |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|
|
pcpkps_70 |
String |
50
|
Recommended |
Development screen specified |
|
|
|
Query
|
pcpkps_71 |
Integer |
|
Recommended |
Development Screen Passed or Failed |
0;1;999
|
0=Failed; 1=Passed; 999=N/A
|
|
Query
|
pcpkps_72 |
Integer |
|
Recommended |
Did child receive ASD screen |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|
|
pcpkps_73 |
String |
50
|
Recommended |
ASD screen specified |
|
|
|
Query
|
pcpkps_74 |
Integer |
|
Recommended |
ASD Screen Passed or Failed |
0;1;999
|
0=Failed; 1=Passed; 999=N/A
|
|
Query
|
pcpkps_75 |
Integer |
|
Recommended |
Referrals Made |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|
|
pcpkps_76 |
String |
100
|
Recommended |
Referral Speicified |
|
|
|
Query
|
pcpkps_77 |
Integer |
|
Recommended |
ASD Risk factor: Parent ASD concern |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|
Query
|
pcpkps_78 |
Integer |
|
Recommended |
ASD Risk factor: PCP ASD concern |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|
Query
|
pcpkps_79 |
Integer |
|
Recommended |
ASD Risk factor: Screening failure |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|
Query
|
pcpkps_80 |
Integer |
|
Recommended |
ASD Risk factor: Older sibling with ASD |
0;1;999
|
0=No; 1=Yes; 999=N/A
|
|