[Federal Register Volume 89, Number 67 (Friday, April 5, 2024)]
[Notices]
[Pages 24007-24008]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[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:
     Federal eRulemaking Portal: www.regulations.gov. Follow 
the instructions for submitting comments.
     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 www.regulations.gov.

    Please note: Submit all comments through the Federal eRulemaking 
portal (www.regulations.gov) 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: [email protected].

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.
                                                 ---------------------------------------------------------------
    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