[NCBDDD] The Study to Explore Early Development (SEED) Follow-up Study

ICR 202504-0920-008

OMB: 0920-1392

Federal Form Document

Forms and Documents
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Justification for No Material/Nonsubstantive Change
2025-04-08
Justification for No Material/Nonsubstantive Change
2025-04-08
Supplementary Document
2025-04-08
Supplementary Document
2025-04-08
Justification for No Material/Nonsubstantive Change
2023-06-14
Justification for No Material/Nonsubstantive Change
2023-06-14
Supplementary Document
2022-08-31
Supplementary Document
2022-08-31
Supporting Statement B
2022-08-31
Supporting Statement B
2022-08-31
Supporting Statement A
2025-04-07
Supporting Statement A
2025-04-07
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
Supplementary Document
2022-08-10
ICR Details
0920-1392 202504-0920-008
Active 202306-0920-008
HHS/CDC 0920-1392-25-0027
[NCBDDD] The Study to Explore Early Development (SEED) Follow-up Study
No material or nonsubstantive change to a currently approved collection   No
Regular
Approved without change 05/09/2025
Retrieve Notice of Action (NOA) 05/05/2025
  Inventory as of this Action Requested Previously Approved
04/30/2026 04/30/2026 04/30/2026
5,433 0 5,433
2,088 0 2,088
0 0 0

This project will be utilized to gain knowledge about the expression of autism spectrum disorder (ASD) from childhood through early adulthood that can inform efforts to improve the health and functioning of individuals with ASD as they mature. The SEED Follow-up Study will collect information from families through surveys on the health and functioning of individuals during childhood, adolescence, and young adulthood, and in-person assessments of cognitive abilities. Data obtained through this information collection may improve our understanding of which co-occurring conditions are most prevalent; increase our understanding of the needs of individuals with ASD; how the needs change with age and can be best met at different points in development; and inform research and public health policies on eligibility for services and public health outreach efforts, that could provide opportunities for education, employment, and social connection to improve the health, functioning, and quality of life among persons with ASD and their families. This CR adds Spanish versions for several of the instruments.

US Code: 42 USC 247b-4 Name of Law: Public Health Service Act
   US Code: 42 USC 241(a) Name of Law: Public Health Service Act
   PL: Pub.L. 106 - 310 101 Name of Law: Children's Health Act of 2000
   PL: Pub.L. 109 - 416 409C Name of Law: Combating Autism Act of 2006
   PL: Pub.L. 113 - 157 1 Name of Law: Autism CARES Act of 2014
   PL: Pub.L. 116 - 60 1-2 Name of Law: Autism CARES Act of 2019
  
None

Not associated with rulemaking

  86 FR 54693 10/04/2021
87 FR 52571 08/26/2022
No

9
IC Title Form No. Form Name
First Follow-Up Survey Supplement for Caregivers of Adolescents 0920-25-0027, 0920, n/a First Follow-up Survey Supplement for Caregivers of Adolescents ,   First Follow-up Survey Supplement for Caregivers of Adolescents - Spanish ,   Att 4a - Adolescent Survey Supplement for SEED 2 Caregivers_4-2-25
First Follow-up Core Survey of SEED 1-3 Caregivers 0920-25-0027, 0920, n/a SEED Follow-Up Health and Development Core Survey ,   SEED Follow-Up Health and Development Core Survey - Spanish ,   SEED Follow-up Core Survey (2f)
First Follow-up Survey Supplement for Caregivers of Children 0920-25-0027, 0920-25-0027, 0920 First Follow-up Survey Supplement for Caregivers of Children ,   Att 3a - Behavior Rating Inventory Of Executive Functioning 2nd Edition (BRIEF-2)_4-2-25 ,   Att 3b - ShortSensoryProfile2 (SSP-2)_4-2-25
First follow-up survey supplement for caregivers of young adults 0920-25-0027, 0920, n/a SEED Follow-Up Study: Young Adult Survey Supplement ,   SEED Follow-up Study: Young Adult Survey Supplement - Spanish ,   Att 5 - Young Adult Survey Supplement for SEED 1 Caregivers_4-2-25
Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers. 0920-25-0027, 0920, n/a Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers ,   Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers - Spanish ,   Att 6b - Enrollment Call Script and Consent 2nd Survey SEED 1 Caregivers_4-2-25
Review of Enrollment Call Script and Consent by Caregivers and Young Adult 0920 Enrollment Call Script for SEED 1 Caregivers and Young Adults
Review of Enrollment and Informed Consent or Assent/In-person Assessment of Intellectual abilities
SEED Follow-up – Call Script for SEED 1-3 Caregivers (1st Follow-Up)
Second follow-up survey of SEED 1 adult children N/A, N/A, N/A, N/A, n/a SEED Follow-Up Study: Second Follow-up Survey of Young Adults (Self-Report) ,   WHO Quality of Life (WHOQOL-BREF) ,   WHOQOL Disabilities Module- ,   Camouflaging Autistic Traits Questionnaire (CAT-Q) ,   SEED Follow-up Study: Second Follow-up Survey of Young Adults (Self Report) - Spanish

  Total Approved Previously Approved Change Due to New Statute Change Due to Agency Discretion Change Due to Adjustment in Estimate Change Due to Potential Violation of the PRA
Annual Number of Responses 5,433 5,433 0 0 0 0
Annual Time Burden (Hours) 2,088 2,088 0 0 0 0
Annual Cost Burden (Dollars) 0 0 0 0 0 0
No
No

$3,934,173
No
    No
    No
No
No
No
No
Kevin Joyce 404 639-1944 [email protected]

  No

On behalf of this Federal agency, I certify that the collection of information encompassed by this request complies with 5 CFR 1320.9 and the related provisions of 5 CFR 1320.8(b)(3).
The following is a summary of the topics, regarding the proposed collection of information, that the certification covers:
 
 
 
 
 
 
 
    (i) Why the information is being collected;
    (ii) Use of information;
    (iii) Burden estimate;
    (iv) Nature of response (voluntary, required for a benefit, or mandatory);
    (v) Nature and extent of confidentiality; and
    (vi) Need to display currently valid OMB control number;
 
 
 
If you are unable to certify compliance with any of these provisions, identify the item by leaving the box unchecked and explain the reason in the Supporting Statement.
05/05/2025


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