OMB control number

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

OMB 0920-1392 · HHS/CDC.

OMB 0920-1392

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.

The latest form for [NCBDDD] The Study to Explore Early Development (SEED) Follow-up Study expires 2026-04-30 and is listed under ICR 202504-0920-008.

Latest Forms, Documents, and Supporting Material

Latest forms, documents, and information collections
Document	Type
SEED Follow-up Study: Second Follow-up Survey of Young Adults (Self Report) - Spanish	Form and Instruction
Camouflaging Autistic Traits Questionnaire (CAT-Q)	Form
WHOQOL Disabilities Module-	Form
WHO Quality of Life (WHOQOL-BREF)	Form
SEED Follow-Up Study: Second Follow-up Survey of Young Adults (Self-Report)	Form
Second follow-up survey of SEED 1 adult children	Form
Form 0920 Enrollment Call Script for SEED 1 Caregivers and Young Adults	Form
Form 0920 Review of Enrollment Call Script and Consent by Caregivers and Young Adult	Form
Form 0920-25-0027 Att 6b - Enrollment Call Script and Consent 2nd Survey SEED 1 Caregivers_4-2-25	Form
Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers - Spanish	Form and Instruction
Form 0920 Enrollment Call Script and Second Follow-up Survey for SEED 1 Caregivers	Form
Form 0920 Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form
Form 0920-25-0027 Att 5 - Young Adult Survey Supplement for SEED 1 Caregivers_4-2-25	Form
SEED Follow-up Study: Young Adult Survey Supplement - Spanish	Form and Instruction
Form 0920 SEED Follow-Up Study: Young Adult Survey Supplement	Form
Form 0920 First follow-up survey supplement for caregivers of young adults	Form
Form 0920-25-0027 Att 4a - Adolescent Survey Supplement for SEED 2 Caregivers_4-2-25	Form
First Follow-up Survey Supplement for Caregivers of Adolescents - Spanish	Form and Instruction
Form 0920 First Follow-up Survey Supplement for Caregivers of Adolescents	Form
Form 0920 First Follow-Up Survey Supplement for Caregivers of Adolescents	Form
Form 0920-25-0027 Att 3b - ShortSensoryProfile2 (SSP-2)_4-2-25	Form
Form 0920-25-0027 Att 3a - Behavior Rating Inventory Of Executive Functioning 2nd Edition (BRIEF-2)_4-2-25	Form
Form 0920 First Follow-up Survey Supplement for Caregivers of Children	Form
Form 0920 First Follow-up Survey Supplement for Caregivers of Children	Form
Form 0920-25-0027 SEED Follow-up Core Survey (2f)	Form
SEED Follow-Up Health and Development Core Survey - Spanish	Form and Instruction
Form 0920 SEED Follow-Up Health and Development Core Survey	Form
Form 0920 First Follow-up Core Survey of SEED 1-3 Caregivers	Form
Change Request Memo - EO14168 Template_SEED Follow-up.docx	Justification for No Material/Nonsubstantive Change
Change Request Memo - EO14168 Template_SEED Follow-up.docx	Justification for No Material/Nonsubstantive Change
Att 3a - Behavior Rating Inventory Of Executive Functioning 2nd Edition (BRIEF-2)_4-2-25.pdf	Supplementary Document
Att 3a - Behavior Rating Inventory Of Executive Functioning 2nd Edition (BRIEF-2)_4-2-25.pdf	Supplementary Document
OMB0920_1392 NonSubstantive Change_Spanish_May 2023_final.docx	Justification for No Material/Nonsubstantive Change
OMB0920_1392 NonSubstantive Change_Spanish_May 2023_final.docx	Justification for No Material/Nonsubstantive Change
Att 2a - Invitation Letter 1st Survey.docx	Supplementary Document
Att 2a - Invitation Letter 1st Survey.docx	Supplementary Document
SEED Follow-up OMB_Supporting Statement B.docx	Supporting Statement B
SEED Follow-up OMB_Supporting Statement B.docx	Supporting Statement B
SEED Follow-up OMB_Supporting Statement A_updated 4-2-25.docx	Supporting Statement A
SEED Follow-up OMB_Supporting Statement A_updated 4-2-25.docx	Supporting Statement A
Att 1e - Autism CARES Act of 2019.pdf	Supplementary Document
Att 1e - Autism CARES Act of 2019.pdf	Supplementary Document
Att 1d - Autism CARES Act of 2014.pdf	Supplementary Document
Att 1d - Autism CARES Act of 2014.pdf	Supplementary Document
Att 1c - Combating Autism Act of 2006.pdf	Supplementary Document
Att 1b - Children's Health Act of 2000.docx	Supplementary Document
Att 1b - Children's Health Act of 2000.docx	Supplementary Document
Att 1a - Public Health Service Act.pdf	Supplementary Document
Att 1a - Public Health Service Act.pdf	Supplementary Document
SEED Follow-up – Call Script for SEED 1-3 Caregivers (1st Follow-Up)	Other-Script
Review of Enrollment and Informed Consent or Assent/In-person Assessment of Intellectual abilities	Instruction
Second follow-up survey of SEED 1 adult children	Form and Instruction
Second follow-up survey of SEED 1 adult children	Form
Second follow-up survey of SEED 1 adult children	Form
Second follow-up survey of SEED 1 adult children	Form
Second follow-up survey of SEED 1 adult children	Form
Second follow-up survey of SEED 1 adult children	Form
Review of Enrollment Call Script and Consent by Caregivers and Young Adult	Form
Review of Enrollment Call Script and Consent by Caregivers and Young Adult	Form
Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form
Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form and Instruction
Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form
Review of Enrollment Call Script and Consent and Second Follow-Up Survey of SEED 1 Caregivers.	Form
First follow-up survey supplement for caregivers of young adults	Form
First follow-up survey supplement for caregivers of young adults	Form and Instruction
First follow-up survey supplement for caregivers of young adults	Form
First follow-up survey supplement for caregivers of young adults	Form
First Follow-Up Survey Supplement for Caregivers of Adolescents	Form
First Follow-Up Survey Supplement for Caregivers of Adolescents	Form and Instruction
First Follow-Up Survey Supplement for Caregivers of Adolescents	Form
First Follow-Up Survey Supplement for Caregivers of Adolescents	Form
First Follow-up Survey Supplement for Caregivers of Children	Form
First Follow-up Survey Supplement for Caregivers of Children	Form
First Follow-up Survey Supplement for Caregivers of Children	Form
First Follow-up Survey Supplement for Caregivers of Children	Form
First Follow-up Core Survey of SEED 1-3 Caregivers	Form
First Follow-up Core Survey of SEED 1-3 Caregivers	Form and Instruction
First Follow-up Core Survey of SEED 1-3 Caregivers	Form
First Follow-up Core Survey of SEED 1-3 Caregivers	Form
First Follow-up Core Survey of SEED 1-3 Caregivers	Other-Script

All Historical Document Collections

Historical document collections
Reference	Filing	Received	Action
202504-0920-008	No material or nonsubstantive change to a currently approved collection	2025-05-05	Approved without change
202502-0920-012	No material or nonsubstantive change to a currently approved collection	2025-03-28	Improperly submitted and continue
202306-0920-008	No material or nonsubstantive change to a currently approved collection	2023-06-15	Approved without change
202208-0920-007	New collection (Request for a new OMB Control Number)	2022-09-27	Approved with change

OMB Details

First Follow-up Core Survey of SEED 1-3 Caregivers

Federal Enterprise Architecture: Health - Public Health Monitoring

Information collection instruments
Form	Name	Electronic access	Type
Form 0920-25-0027	SEED Follow-up Core Survey (2f)	Fillable Fileable	Form
Form n/a	SEED Follow-Up Health and Development Core Survey - Spanish	Fillable Fileable	Form and instruction
Form 0920	SEED Follow-Up Health and Development Core Survey	Fillable Fileable	Form

Review document collections for all forms, instructions, and supporting documents - including paper/printable forms.