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

Forms and Documents

Document Name	Status
Second follow-up survey of SEED 1 adult children Form	Unchanged
Second follow-up survey of SEED 1 adult children Form	Unchanged
Form 0920 Review of Enrollment Call Script and Consent by Caregivers and Young Adult Form	Unchanged
Form 0920 Review of Enrollment Call Script and Consent by Caregivers and Young Adult Form	Unchanged
Form 0920 Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers. Form	Modified
Form 0920 Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers. Form	Modified
Form 0920 First follow-up survey supplement for caregivers of young adults Form	Modified
Form 0920 First follow-up survey supplement for caregivers of young adults Form	Modified
Form 0920 First Follow-Up Survey Supplement for Caregivers of Adolescents Form	Modified
Form 0920 First Follow-Up Survey Supplement for Caregivers of Adolescents Form	Modified
Form 0920 First Follow-up Survey Supplement for Caregivers of Children Form	Modified
Form 0920 First Follow-up Survey Supplement for Caregivers of Children Form	Modified
Form 0920 First Follow-up Core Survey of SEED 1-3 Caregivers Form	Modified
Form 0920 First Follow-up Core Survey of SEED 1-3 Caregivers Form	Modified
Change Request Memo - EO14168 Template_SEED Follow-up.docx Justification for No Material/Nonsubstantive Change	2025-04-08
Change Request Memo - EO14168 Template_SEED Follow-up.docx Justification for No Material/Nonsubstantive Change	2025-04-08
Att 3a - Behavior Rating Inventory Of Executive Functioning 2nd Edition (BRIEF-2)_4-2-25.pdf Supplementary Document	2025-04-08
Att 3a - Behavior Rating Inventory Of Executive Functioning 2nd Edition (BRIEF-2)_4-2-25.pdf Supplementary Document	2025-04-08
OMB0920_1392 NonSubstantive Change_Spanish_May 2023_final.docx Justification for No Material/Nonsubstantive Change	2023-06-14
OMB0920_1392 NonSubstantive Change_Spanish_May 2023_final.docx Justification for No Material/Nonsubstantive Change	2023-06-14
Att 2a - Invitation Letter 1st Survey.docx Supplementary Document	2022-08-31
Att 2a - Invitation Letter 1st Survey.docx Supplementary Document	2022-08-31
SEED Follow-up OMB_Supporting Statement B.docx Supporting Statement B	2022-08-31
SEED Follow-up OMB_Supporting Statement B.docx Supporting Statement B	2022-08-31
SEED Follow-up OMB_Supporting Statement A_updated 4-2-25.docx Supporting Statement A	2025-04-07
SEED Follow-up OMB_Supporting Statement A_updated 4-2-25.docx Supporting Statement A	2025-04-07
Att 1e - Autism CARES Act of 2019.pdf Supplementary Document	2022-08-10
Att 1e - Autism CARES Act of 2019.pdf Supplementary Document	2022-08-10
Att 1d - Autism CARES Act of 2014.pdf Supplementary Document	2022-08-10
Att 1d - Autism CARES Act of 2014.pdf Supplementary Document	2022-08-10
Att 1c - Combating Autism Act of 2006.pdf Supplementary Document	2022-08-10
Att 1c - Combating Autism Act of 2006.pdf Supplementary Document	2022-08-10
Att 1b - Children's Health Act of 2000.docx Supplementary Document	2022-08-10
Att 1b - Children's Health Act of 2000.docx Supplementary Document	2022-08-10
Att 1a - Public Health Service Act.pdf Supplementary Document	2022-08-10
Att 1a - Public Health Service Act.pdf Supplementary Document	2022-08-10

IC Document Collections

IC ID	Document Title	Status
256059	SEED Follow-up – Call Script for SEED 1-3 Caregivers (1st Follow-Up) Other-Script	Unchanged
255815	Review of Enrollment and Informed Consent or Assent/In-person Assessment of Intellectual abilities Instruction	Unchanged
255814	Second follow-up survey of SEED 1 adult children Form	Unchanged
255814	Second follow-up survey of SEED 1 adult children Form	Unchanged
255813	Review of Enrollment Call Script and Consent by Caregivers and Young Adult Form	Unchanged
255813	Review of Enrollment Call Script and Consent by Caregivers and Young Adult Form	Unchanged
255812	Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers. Form	Modified
255812	Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers. Form	Modified
255811	First follow-up survey supplement for caregivers of young adults Form	Modified
255811	First follow-up survey supplement for caregivers of young adults Form	Modified
255809	First Follow-Up Survey Supplement for Caregivers of Adolescents Form	Modified
255809	First Follow-Up Survey Supplement for Caregivers of Adolescents Form	Modified
255808	First Follow-up Survey Supplement for Caregivers of Children Form	Modified
255808	First Follow-up Survey Supplement for Caregivers of Children Form	Modified
255807	First Follow-up Core Survey of SEED 1-3 Caregivers Form	Modified
255807	First Follow-up Core Survey of SEED 1-3 Caregivers Form	Modified

ICR Details

OMB Control No: 0920-1392	ICR Reference No: 202504-0920-008
Status: Active	Previous ICR Reference No: 202306-0920-008
Agency/Subagency: HHS/CDC	Agency Tracking No: 0920-1392-25-0027
Title: [NCBDDD] The Study to Explore Early Development (SEED) Follow-up Study
Type of Information Collection: No material or nonsubstantive change to a currently approved collection	Common Form ICR:  No
Type of Review Request: Regular
OIRA Conclusion Action: Approved without change	Conclusion Date: 05/09/2025
	Date Received in OIRA: 05/05/2025
Terms of Clearance:

	Inventory as of this Action	Requested	Previously Approved
Expiration Date	04/30/2026	04/30/2026	04/30/2026
Responses	5,433	0	5,433
Time Burden (Hours)	2,088	0	2,088
Cost Burden (Dollars)	0	0	0

---

Abstract: 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.

---

Authorizing Statute(s): 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
  

Citations for New Statutory Requirements: None

---

Associated Rulemaking Information
RIN:	Stage of Rulemaking:	Federal Register Citation:	Date:
	Not associated with rulemaking

---

Federal Register Notices & Comments
60-day Notice:	Federal Register Citation:	Citation Date:
	86 FR 54693	10/04/2021
30-day Notice:	Federal Register Citation:	Citation Date:
	87 FR 52571	08/26/2022
Did the Agency receive public comments on this ICR? No

---

Number of Information Collection (IC) in this ICR: 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

---

ICR Summary of Burden

	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

Burden increases because of Program Change due to Agency Discretion: No

Burden Increase Due to:

Burden decreases because of Program Change due to Agency Discretion: No

Burden Reduction Due to:

Short Statement:

---

Annual Cost to Federal Government: $3,934,173

Does this IC contain surveys, censuses, or employ statistical methods? No

Does this ICR request any personally identifiable information (see OMB Circular No. A-130 for an explanation of this term)? Please consult with your agency's privacy program when making this determination.     No

Does this ICR include a form that requires a Privacy Act Statement (see 5 U.S.C. §552a(e)(3))? Please consult with your agency's privacy program when making this determination.     No

Is this ICR related to the Affordable Care Act [Pub. L. 111-148 & 111-152]? No

Is this ICR related to the Dodd-Frank Wall Street Reform and Consumer Protection Act, [Pub. L. 111-203]? No

Is this ICR related to the American Recovery and Reinvestment Act of 2009 (ARRA)? No

Is this ICR related to the Pandemic Response? No

---

Common Form ICR:  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:

(a) It is necessary for the proper performance of agency functions;

(b) It avoids unnecessary duplication;

(c) It reduces burden on small entities;

(d) It uses plain, coherent, and unambiguous language that is understandable to respondents;

(e) Its implementation will be consistent and compatible with current reporting and recordkeeping practices;

(f) It indicates the retention periods for recordkeeping requirements;

(g) It informs respondents of the information called for under 5 CFR 1320.8 (b)(3) about:

(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;

(h) It was developed by an office that has planned and allocated resources for the efficient and effective management and use of the information to be collected.

(i) It uses effective and efficient statistical survey methodology (if applicable); and

(j) It makes appropriate use of information technology.

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.

Certification Date: 05/05/2025

---