Notice2024-07288
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
April 5, 2024
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 comment on a proposed information collection project titled Documenting outcomes associated with Persistent Tic Disorders (including Tourette Syndrome) in Children, Adolescents, and Young Adults through Surveillance. This study will collect data on the public health impact of persistent tic disorders from children and adolescents with tic disorders and their parents, as well as young adults with tic disorders.
Full Text
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<title>Federal Register, Volume 89 Issue 67 (Friday, April 5, 2024)</title>
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[Federal Register Volume 89, Number 67 (Friday, April 5, 2024)]
[Notices]
[Pages 24007-24008]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2024-07288]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
[60Day-24-24EG; Docket No. CDC-2024-0024]
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 comment on a proposed information collection project
titled Documenting outcomes associated with Persistent Tic Disorders
(including Tourette Syndrome) in Children, Adolescents, and Young
Adults through Surveillance. This study will collect data on the public
health impact of persistent tic disorders from children and adolescents
with tic disorders and their parents, as well as young adults with tic
disorders.
DATES: CDC must receive written comments on or before June 4, 2024.
ADDRESSES: You may submit comments, identified by Docket No. CDC-2024-
0024 by either of the following methods:
<bullet> Federal eRulemaking Portal: <a href="http://www.regulations.gov">www.regulations.gov</a>. Follow
the instructions for submitting comments.
<bullet> 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: 404-639-7570;
Email: <a href="/cdn-cgi/l/email-protection#6f00020d2f0c0b0c41080019"><span class="__cf_email__" data-cfemail="a2cdcfc0e2c1c6c18cc5cdd4">[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
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 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), including 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. All questions for the Tic Impact Surveillance Survey, the
survey created for this surveillance project, were selected from
national surveys or previously validated measures. This will allow us
to compare estimates from the Tic Impact Surveillance Survey to
external prevalence estimates for the same health indicators in US
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 health inequities among the population.
CDC requests OMB approval for an estimated 401 annual burden hours.
There is no cost to respondents other than their time to participate.
[[Page 24008]]
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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Parents of children 4-17 years Parent.......... 225 1 45/60 169
with a persistent tic
disorder.
Children 4-8 years with a Child 4-8....... 30 1 20/60 10
persistent tic disorder.
Children 9-11 years with a Child 9-11...... 45 1 45/60 34
persistent tic disorder.
Adolescents (teens) 12-17 Adolescent...... 150 1 45/60 113
years with a persistent tic
disorder.
Adults (18-26 years) with a Adult........... 75 1 1 75
persistent tic disorder.
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Total..................... ................ .............. .............. .............. 401
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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. 2024-07288 Filed 4-4-24; 8:45 am]
BILLING CODE 4163-18-P
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