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 can be found here.

Latest Forms, Documents, and Supporting Material

Document Name
Second follow-up survey of SEED 1 adult children Form
Second follow-up survey of SEED 1 adult children Form
Form 0920 Review of Enrollment Call Script and Consent by Caregivers and Young Adult Form
Form 0920 Review of Enrollment Call Script and Consent by Caregivers and Young Adult Form
Form 0920 Review of Enrollment Call Script and Consent and Second Follow-Up Survey of 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 First follow-up survey supplement for caregivers of young adults Form
Form 0920 First follow-up survey supplement for caregivers of young adults Form
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 First Follow-up Survey Supplement for Caregivers of Children Form
Form 0920 First Follow-up Survey Supplement for Caregivers of Children Form
Form 0920 First Follow-up Core Survey of SEED 1-3 Caregivers 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 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
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
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
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

All Historical Document Collections

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

OMB Details

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

Federal Enterprise Architecture: Health - Public Health Monitoring

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.