Notice2026-01617
Proposed Data Collection Submitted for Public Comment and Recommendations
Primary source
Metadata and text below are from the Federal Register, a public-domain U.S. government work. Always verify the official published version before relying on it for any legal matter.
Published
January 27, 2026
Issuing agencies
Health and Human Services DepartmentCenters for Disease Control and Prevention
Abstract
The Centers for Disease Control and Prevention (CDC), as part of its continuing effort to reduce public burden and maximize the utility of government information, invites the general public and other Federal agencies the opportunity to comment on a proposed information collection, as required by the Paperwork Reduction Act of 1995. This notice invites comments on a proposed information collection project titled Survey to Promote Resources and Opportunities for aUtistic Teens and young adults (SPROUT). This follow-up survey will allow CDC to collect longitudinal data on prior participants in the Study to Explore Early Development (SEED) and family members in order to better understand the healthcare utilization, service and support needs, and impact of co-occurring conditions on autistic adolescents and young adults and their families, as well as the educational, social, and/or vocational needs and experiences of autistic adolescents and young adults.
Full Text
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<title>Federal Register, Volume 91 Issue 17 (Tuesday, January 27, 2026)</title>
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[Federal Register Volume 91, Number 17 (Tuesday, January 27, 2026)]
[Notices]
[Pages 3502-3504]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2026-01617]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
[60Day-26-0017; Docket No. CDC-2026-0067]
Proposed Data Collection Submitted for Public Comment and
Recommendations
AGENCY: Centers for Disease Control and Prevention (CDC), Department of
Health and Human Services (HHS).
ACTION: Notice with comment period.
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SUMMARY: The Centers for Disease Control and Prevention (CDC), as part
of its continuing effort to reduce public burden and maximize the
utility of government information, invites the general public and other
Federal agencies the opportunity to comment on a proposed information
collection, as required by the Paperwork Reduction Act of 1995. This
notice invites comments on a proposed information collection project
titled Survey to Promote Resources and Opportunities for aUtistic Teens
and young adults (SPROUT). This follow-up survey will allow CDC to
collect longitudinal data on prior participants in the Study to Explore
Early Development (SEED) and family members in order to better
understand the healthcare utilization, service and support needs, and
impact of co-occurring conditions on autistic adolescents and young
adults and their families, as well as the educational,
[[Page 3503]]
social, and/or vocational needs and experiences of autistic adolescents
and young adults.
DATES: CDC must receive written comments on or before March 30, 2026.
ADDRESSES: You may submit comments, identified by Docket No. CDC-2026-
0067 by either of the following methods:
[ballot] Federal eRulemaking Portal: <a href="http://www.regulations.gov">www.regulations.gov</a>. Follow
the instructions for submitting comments.
[ballot] Mail: Jeffrey M. Zirger, Information Collection Review
Office, Centers for Disease Control and Prevention, 1600 Clifton Road
NE, MS H21-8, Atlanta, Georgia 30329.
Instructions: All submissions received must include the agency name
and Docket Number. CDC will post, without change, all relevant comments
to <a href="http://www.regulations.gov">www.regulations.gov</a>.
Please note: Submit all comments through the Federal eRulemaking
portal (<a href="http://www.regulations.gov">www.regulations.gov</a>) or by U.S. mail to the address listed
above.
FOR FURTHER INFORMATION CONTACT: To request more information on the
proposed project or to obtain a copy of the information collection plan
and instruments, contact Jeffrey M. Zirger, Information Collection
Review Office, Centers for Disease Control and Prevention, 1600 Clifton
Road NE, MS H21-8, Atlanta, Georgia 30329; Telephone: 404-639-7118;
Email: <a href="/cdn-cgi/l/email-protection#335c5e51735057501d545c45"><span class="__cf_email__" data-cfemail="8ce3e1eeccefe8efa2ebe3fa">[email protected]</span></a>.
SUPPLEMENTARY INFORMATION: Under the Paperwork Reduction Act of 1995
(PRA) (44 U.S.C. 3501-3520), federal agencies must obtain approval from
the Office of Management and Budget (OMB) for each collection of
information they conduct or sponsor. In addition, the PRA also requires
federal agencies to provide a 60-day notice in the Federal Register
concerning each proposed collection of information, including each new
proposed collection, each proposed extension of existing collection of
information, and each reinstatement of previously approved information
collection before submitting the collection to the OMB for approval. To
comply with this requirement, we are publishing this notice of a
proposed data collection as described below.
The OMB is particularly interested in comments that will help:
1. Evaluate whether the proposed collection of information is
necessary for the proper performance of the functions of the agency,
including whether the information will have practical utility;
2. Evaluate the accuracy of the agency's estimate of the burden of
the proposed collection of information, including the validity of the
methodology and assumptions used;
3. Enhance the quality, utility, and clarity of the information to
be collected;
4. Minimize the burden of the collection of information on those
who are to respond, including through the use of appropriate automated,
electronic, mechanical, or other technological collection techniques or
other forms of information technology, e.g., permitting electronic
submissions of responses; and
5. Assess information collection costs.
Proposed Project
Survey to Promote Resources and Opportunities for aUtistic Teens
and young adults (SPROUT)--New--National Center on Birth Defects and
Developmental Disabilities (NCBDDD), Centers for Disease Control and
Prevention (CDC).
Background and Brief Description
In 2022, an estimated one in 31 children eight years of age living
in 16 communities across the United States had autism, a developmental
disability that can cause significant social, communication, and
behavior challenges. The Study to Explore Early Development (SEED) was
implemented in 2006 to learn more about autism and other developmental
disabilities in children 2-5-years of age. Extensive data, from
interviews, in-person evaluations, and other sources were collected
across three phases (SEED 1-3) in eight geographic areas (California,
Colorado, Georgia, Maryland, Missouri, North Carolina, Pennsylvania,
and Wisconsin). SEED 1-3 collected data on 9,808 preschool-aged
children with autism, another developmental delay or disability, or
from the general population. To date, almost 100 analyses of SEED 1-3
data have been published in peer-reviewed journals.
To better understand transition and lifespan issues affecting
people with autism as they age, caregivers of children enrolled in SEED
1 (2006-2011) were eligible to participate in a pilot follow-up survey
when their child was between 12-16 years of age (2018-2021; SEED Teen).
An important outcome of SEED Teen was to demonstrate that longitudinal
data collection from SEED participants is feasible (i.e., contact was
established with approximately 97% of eligible participants and, of
those, 64% enrolled in SEED Teen). SEED Follow-Up was thus initiated in
2021 to survey the broader cohort of SEED 1-3 participants on
adolescent and young adult health and well-being. SEED Follow-Up is
currently ongoing until June 2026.
The federal government identified a need to improve efforts to
better understand lifespan issues among people with autism in the
Autism CARES Act of 2024 and a report to Congress in 2017. Despite
this, a recent portfolio analysis from the Interagency Autism
Coordinating Committee (IACC), indicated that lifespan issues continue
to receive the least amount of autism funding from federal agencies.
Both the SEED Teen and SEED Follow-Up surveys helped identify
healthcare needs and experiences among adolescents with autism.
However, gaps in understanding remain in how we can best support
adolescents and young adults with autism and their families.
Draft chapters of the 2024 IACC Strategic Plan Update emphasize the
need for data on service and support needs and conditions that commonly
co-occur with autism. On behalf of the IACC, the Office of National
Autism Coordination (ONAC) released a Request for Public Comment on
these topics from members of the autistic community. Some identified
service and support needs were: (1) provider training; (2) more
benefits and insurance coverage; and 3) help with system navigation.
Some commonly reported co-occurring conditions were sensory and motor
issues, anxiety disorder, sleep problems, attention deficits,
hyperactivity, gastrointestinal issues, learning and memory issues, and
suicidal ideation. Other topics identified as important to the autistic
community are social, education, and vocational experiences and
outcomes.
The current information collection request is to conduct
longitudinal follow-up surveys that offer unique information about
autistic adolescents and young adults, thereby addressing the
priorities established in the Autism CARES Act of 2024 and draft 2024
IACC Strategic Plan. Given the size of the original SEED birth cohorts
and the wealth of baseline and follow-up information collected,
additional surveys of participants can help address critical
information gaps. Specifically, the information collected from the
Survey to Promote Resources and Opportunities for aUtistic Teens and
young adults (SPROUT) will allow us to better understand: (1) the
healthcare utilization of, service and support needs of, and impact of
co-occurring conditions on autistic people and their families; and (2)
the educational, social, and/or vocational needs and experiences of
autistic adolescents and young adults.
[[Page 3504]]
One survey will be administered to caregivers and a second is a
self-report survey administered to children, adolescents and young
adults age 9-27. The survey version will be based on the child
participant's age and ability to self-report on healthcare utilization,
service and support needs, co-occurring conditions, and healthcare
transition. CDC requests OMB approval for an estimated 1,510 annual
burden hours. There are no costs to respondents other than their time
to participate.
Estimated Annualized Burden Hours
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Number of Average burden
Type of respondents Form name Number of responses per per response Total burden
respondents respondent (in hours) (in hours)
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Caregivers.................... Survey 1........ 1,310 1 30/60 565
Caregivers.................... Survey 2........ 180 1 30/60 90
Caregivers.................... Survey 3........ 90 1 30/60 45
Caregivers.................... Survey 4........ 1,600 1 10/60 266
Children and adolescents...... Self-report 575 1 15/60 144
Survey 1.
Young adults.................. Self-report 800 1 30/60 400
Survey 2.
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Total..................... ................ .............. .............. .............. 1,510
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Jeffrey M. Zirger,
Lead, Information Collection Review Office, Office of Public Health
Ethics and Regulations, Office of Science, Centers for Disease Control
and Prevention.
[FR Doc. 2026-01617 Filed 1-26-26; 8:45 am]
BILLING CODE 4163-18-P
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