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

Forms and Documents

Forms and supporting documents for this ICR

Document	Type	Status	Availability
SEED Follow-up Study: Second Follow-up Survey of Young Adults (Self Report) - Spanish	Form and Instruction	Unchanged	Available
Camouflaging Autistic Traits Questionnaire (CAT-Q)	Form	Unchanged	Available
WHOQOL Disabilities Module-	Form	Unchanged	Repair queued
WHO Quality of Life (WHOQOL-BREF)	Form	Unchanged	Available
SEED Follow-Up Study: Second Follow-up Survey of Young Adults (Self-Report)	Form	Unchanged	Repair queued
Second follow-up survey of SEED 1 adult children	Form	Unchanged	Repair queued
Form 0920 Enrollment Call Script for SEED 1 Caregivers and Young Adults	Form	Unchanged	Available
Form 0920 Review of Enrollment Call Script and Consent by Caregivers and Young Adult	Form	Unchanged	Repair queued
Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers - Spanish	Form and Instruction	Unchanged	Repair queued
Form 0920 Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers	Form	Unchanged	Repair queued
Form 0920 Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form	Unchanged	Missing upstream
Form 0920-25-0027 SEED Young Adult Self Reporting Survey	Form	Modified	Repair queued
SEED Follow-up Study: Young Adult Survey Supplement - Spanish	Form and Instruction	Modified	Available
Form 0920 SEED Follow-Up Study: Young Adult Survey Supplement	Form	Modified	Available
Form 0920 First follow-up survey supplement for caregivers of young adults	Form	Modified	Repair queued
First Follow-up Survey Supplement for Caregivers of Adolescents - Spanish	Form and Instruction	Unchanged	Available
Form 0920 First Follow-up Survey Supplement for Caregivers of Adolescents	Form	Unchanged	Available
Form 0920 First Follow-Up Survey Supplement for Caregivers of Adolescents	Form	Unchanged	Missing upstream
Form 0920 First Follow-up Survey Supplement for Caregivers of Children	Form	Unchanged	Available
Form 0920 First Follow-up Survey Supplement for Caregivers of Children	Form	Unchanged	Missing upstream
Form 0920-25-0027 SEED Follow-up Core Survey	Form	Modified	Available
Form 0920-25-0027 SEED Follow-Up Health and Development Core Survey	Form	Modified	Repair queued
Attachment 7f - WHOQOL-BREF and Scoring Instructions.pdf	Supplementary Document	Uploaded 2025-02-26	Available
Attachment 7f - WHOQOL-BREF and Scoring Instructions.pdf	Supplementary Document	Uploaded 2025-02-26	Missing upstream
Change Request Memo - EO14168 Template_SEED Follow-up.docx	Supplementary Document	Uploaded 2025-02-26	Available
Change Request Memo - EO14168 Template_SEED Follow-up.docx	Supplementary Document	Uploaded 2025-02-26	Repair queued
Change Request Memo - EO14168 Template_SEED Follow-up.docx	Supplementary Document	Uploaded 2025-02-26	Available
Change Request Memo - EO14168 Template_SEED Follow-up.docx	Supplementary Document	Uploaded 2025-02-26	Missing upstream
Attachment 3a - BRIEF-2_changes.pdf	Supplementary Document	Uploaded 2025-02-26	Available
Attachment 3a - BRIEF-2_changes.pdf	Supplementary Document	Uploaded 2025-02-26	Repair queued
OMB0920_1392 NonSubstantive Change_Spanish_May 2023_final.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2023-06-14	Repair queued
OMB0920_1392 NonSubstantive Change_Spanish_May 2023_final.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2023-06-14	Repair queued
Att 2a - Invitation Letter 1st Survey.docx	Supplementary Document	Uploaded 2022-08-31	Repair queued
Att 2a - Invitation Letter 1st Survey.docx	Supplementary Document	Uploaded 2022-08-31	Repair queued
SEED Follow-up OMB_Supporting Statement B.docx	Supporting Statement B	Uploaded 2022-08-31	Available
SEED Follow-up OMB_Supporting Statement B.docx	Supporting Statement B	Uploaded 2022-08-31	Missing upstream
SEED Follow-up OMB_SSA_9.26.22_OIRA 3.31.23_lw_SCT.docx	Supporting Statement A	Uploaded 2023-04-11	Available
SEED Follow-up OMB_SSA_9.26.22_OIRA 3.31.23_lw_SCT.docx	Supporting Statement A	Uploaded 2023-04-11	Repair queued
Att 1e - Autism CARES Act of 2019.pdf	Supplementary Document	Uploaded 2022-08-10	Available
Att 1e - Autism CARES Act of 2019.pdf	Supplementary Document	Uploaded 2022-08-10	Missing upstream
Att 1d - Autism CARES Act of 2014.pdf	Supplementary Document	Uploaded 2022-08-10	Available
Att 1d - Autism CARES Act of 2014.pdf	Supplementary Document	Uploaded 2022-08-10	Missing upstream
Att 1c - Combating Autism Act of 2006.pdf	Supplementary Document	Uploaded 2022-08-10	Available
Att 1c - Combating Autism Act of 2006.pdf	Supplementary Document	Uploaded 2022-08-10	Missing upstream
Att 1b - Children's Health Act of 2000.docx	Supplementary Document	Uploaded 2022-08-10	Available
Att 1b - Children's Health Act of 2000.docx	Supplementary Document	Uploaded 2022-08-10	Repair queued
Att 1a - Public Health Service Act.pdf	Supplementary Document	Uploaded 2022-08-10	Available
Att 1a - Public Health Service Act.pdf	Supplementary Document	Uploaded 2022-08-10	Missing upstream

IC Document Collections

Information collection document groups

IC ID	Collection	Type	Status	Form
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 and Instruction	Unchanged	SEED Follow-up Study: Second Follow-up Survey of Young Adults (Self Report) - Spanish
255814	Second follow-up survey of SEED 1 adult children	Form	Unchanged	Camouflaging Autistic Traits Questionnaire (CAT-Q)
255814	Second follow-up survey of SEED 1 adult children	Form	Unchanged	WHOQOL Disabilities Module-
255814	Second follow-up survey of SEED 1 adult children	Form	Unchanged	WHO Quality of Life (WHOQOL-BREF)
255814	Second follow-up survey of SEED 1 adult children	Form	Unchanged	SEED Follow-Up Study: Second Follow-up Survey of Young Adults (Self-Report)
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	Enrollment Call Script for SEED 1 Caregivers and Young Adults
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 and Instruction	Unchanged	Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers - Spanish
255812	Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form	Unchanged	Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers
255812	Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form	Unchanged
255811	First follow-up survey supplement for caregivers of young adults	Form	Modified	SEED Young Adult Self Reporting Survey
255811	First follow-up survey supplement for caregivers of young adults	Form and Instruction	Modified	SEED Follow-up Study: Young Adult Survey Supplement - Spanish
255811	First follow-up survey supplement for caregivers of young adults	Form	Modified	SEED Follow-Up Study: Young Adult Survey Supplement
255811	First follow-up survey supplement for caregivers of young adults	Form	Modified
255809	First Follow-Up Survey Supplement for Caregivers of Adolescents	Form and Instruction	Unchanged	First Follow-up Survey Supplement for Caregivers of Adolescents - Spanish
255809	First Follow-Up Survey Supplement for Caregivers of Adolescents	Form	Unchanged	First Follow-up Survey Supplement for Caregivers of Adolescents
255809	First Follow-Up Survey Supplement for Caregivers of Adolescents	Form	Unchanged
255808	First Follow-up Survey Supplement for Caregivers of Children	Form	Unchanged	First Follow-up Survey Supplement for Caregivers of Children
255808	First Follow-up Survey Supplement for Caregivers of Children	Form	Unchanged
255807	SEED Follow-Up Health and Development Core Survey	Form	Modified	SEED Follow-up Core Survey
255807	SEED Follow-Up Health and Development Core Survey	Form	Modified

ICR Details

OMB Control No: 0920-1392	ICR Reference No: 202502-0920-012
Status: Historical Inactive	Previous ICR Reference No: 202306-0920-008
Agency/Subagency: HHS/CDC	Agency Tracking No: 0920-25-0027
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: Improperly submitted and continue	Conclusion Date: 04/01/2025
Retrieve Notice of Action (NOA)	Date Received in OIRA: 03/28/2025
Terms of Clearance:

table that charts list comparision

	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

table that charts list of burden

IC Title	Form No.	Form Name
First Follow-Up Survey Supplement for Caregivers of Adolescents	0920, n/a	First Follow-up Survey Supplement for Caregivers of Adolescents ,   First Follow-up Survey Supplement for Caregivers of Adolescents - Spanish
First Follow-up Survey Supplement for Caregivers of Children	0920	First Follow-up Survey Supplement for Caregivers of Children
First follow-up survey supplement for caregivers of young adults	0920, n/a, 0920-25-0027	SEED Follow-Up Study: Young Adult Survey Supplement ,   SEED Follow-up Study: Young Adult Survey Supplement - Spanish ,   SEED Young Adult Self Reporting Survey
Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	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
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 Health and Development Core Survey	0920-25-0027	SEED Follow-up Core Survey
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

---

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: 03/28/2025

---