[Federal Register Volume 90, Number 112 (Thursday, June 12, 2025)]
[Notices]
[Pages 24797-24798]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2025-10725]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
[30Day-25-24EG]
Agency Forms Undergoing Paperwork Reduction Act Review
In accordance with the Paperwork Reduction Act of 1995, the Centers
for Disease Control and Prevention (CDC) has submitted the information
collection request titled ``Documenting Outcomes Associated with
Persistent Tic Disorders (including Tourette Syndrome) in Children,
Adolescents, and Young Adults through Surveillance'' to the Office of
Management and Budget (OMB) for review and approval. CDC previously
published a ``Proposed Data Collection Submitted for Public Comment and
Recommendations'' notice on April 5, 2024 to obtain comments from the
public and affected agencies. CDC did not receive comments related to
the previous notice. This notice serves to allow an additional 30 days
for public and affected agency comments.
CDC will accept all comments for this proposed information
collection project. The Office of Management and Budget is particularly
interested in comments that:
(a) 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;
(b) Evaluate the accuracy of the agencies estimate of the burden of
the proposed collection of information, including the validity of the
methodology and assumptions used;
(c) Enhance the quality, utility, and clarity of the information to
be collected;
(d) 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 submission of responses; and
(e) Assess information collection costs.
To request additional information on the proposed project or to
obtain a copy of the information collection plan and instruments, call
(404) 639-7570. Comments and recommendations for the proposed
information collection should be sent within 30 days of publication of
this notice to www.reginfo.gov/public/do/PRAMain. Find this particular
information collection by selecting ``Currently under 30-day Review--
Open for Public Comments'' or by using the search function. Direct
written comments and/or suggestions regarding the items contained in
this notice to the Attention: CDC Desk Officer, Office of Management
and Budget, 725 17th Street NW, Washington, DC 20503 or by fax to (202)
395-5806. Provide written comments within 30 days of notice
publication.
Proposed Project
Documenting outcomes associated with Persistent Tic Disorders
(including Tourette Syndrome) in Children, Adolescents, and Young
Adults through Surveillance--New--National Center on Birth Defects and
Developmental
[[Page 24798]]
Disabilities (NCBDDD), Centers for Disease Control and Prevention
(CDC).
Background and Brief Description
There are an estimated 1.4 million people in the U.S. affected by
persistent tic disorders (PTD) or Tourette syndrome (TS). To support
people with these conditions, the impact of PTD/TS must be understood.
Although some data on the impact of PTD/TS on social relationships and
education are available, other potential outcomes associated with PTD/
TS have not been well-documented, including associated costs,
suicidality, health care transition, and the prevalence of co-occurring
disorders and how co-occurring disorders modify these outcomes. Limited
data are available on how these outcomes may differ among sub-
populations (e.g., by sex, race/ethnicity, age group, and geography
[e.g., urban/rural]).
This data collection aims to document priority outcomes including
costs (e.g., education level, employment, healthcare beyond those
available in claims data), prevalence of suicidality risk, transition
to adult healthcare, and the prevalence of co-occurring conditions and
how they modify these outcomes among children and adolescents (4-17
years) and young adults (18-26 years) with PTD/TS. Data will be
collected once from a participant (i.e., individuals with PTD/TS and/or
their caregiver), via a survey, and a clinical assessment of tic
symptoms. We will also extract data from medical records. Most
questions for the survey created for this surveillance project were
selected from national surveys or previously validated measures. This
will allow us to compare estimates from this project to external
prevalence estimates for the same health indicators in U.S. children,
adolescents, and young adults in the general population and to
previously published findings. Data will be used to inform where
resources for families and healthcare providers (e.g., professional
trainings) are most needed to support people with PTD/TS and their
families and to address differences in health among subgroups of the
population.
As a result of working with awardees to finalize measures, and
decisions to rely on parent-report for the majority of indicators for
this age group, CDC has updated the burden estimates for this data
collection. CDC requests OMB approval for an estimated 500 annual
burden hours. There is no cost 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
respondents respondent (in hours)
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Parents of children 4-17 years with a Parent................... 300 1 45/60
persistent tic disorder.
Children 4-8 years with a persistent Child 4-8................ 60 1 20/60
tic disorder.
Children 9-11 years with a persistent Child 9-11............... 100 1 30/60
tic disorder.
Adolescents (teens) 12-17 years with a Adolescent............... 140 1 45/60
persistent tic disorder.
Adults (18-26 years) with a persistent Adult.................... 100 1 1
tic disorder.
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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. 2025-10725 Filed 6-11-25; 8:45 am]
BILLING CODE 4163-18-P