[Federal Register Volume 87, Number 184 (Friday, September 23, 2022)]
[Notices]
[Pages 58095-58096]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2022-20601]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[60Day-22-22IV; Docket No. CDC-2022-0112]


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 The Muscular Dystrophy Surveillance, Tracking, and Research 
Network (MD STARnet) Muscular Dystrophy Questionnaire. The purpose of 
the proposed study is to describe the epidemiology of COVID-19 and flu 
and the experience with pain, fatigue, pregnancy, and infertility for 
adults living with muscular dystrophy (MD) who are identified through 
MD STARnet. Information will be used to develop interventions that 
improve the lives of people with MD and their families.

DATES: CDC must receive written comments on or before November 22, 
2022.

ADDRESSES: You may submit comments, identified by Docket No. CDC-2022-
0112 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: 404-639-7118; 
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

    The Muscular Dystrophy Surveillance, Tracking, and Research Network 
(MD STARnet) Muscular Dystrophy Questionnaire--New--National Center on 
Birth Defects and Developmental Disabilities (NCBDDD), Centers for 
Disease Control and Prevention (CDC).

Background and Brief Description

    Since its establishment in 2002, the MD STARnet has been a 
population-based surveillance system that aims to identify and collect 
clinical data on individuals with muscular dystrophy (MD) in select 
surveillance areas. MD STARnet identifies and collects data on cases at 
sources, including healthcare facilities where patients with MD

[[Page 58096]]

receive care and administrative datasets such as vital records and 
hospital discharge data. While MDs are rare genetic diseases with an 
estimated prevalence of 16.1/100,000, they have a high impact on 
affected individuals, their families, and society. MDs can be 
classified into nine major groups: Duchenne muscular dystrophy (DMD), 
Becker muscular dystrophy (BMD), myotonic dystrophy (DM), 
facioscapulohumeral muscular dystrophy (FSHD), limb-girdle muscular 
dystrophy (LGMD), congenital muscular dystrophy (CMD), Emery-Dreifuss 
muscular dystrophy (EDMD), and distal MD. A recent MD STARnet study has 
estimated the combined prevalence for DMD and BMD to be 1.92-2.48/
10,000 males age 5-9 years old. MD STARnet aims to improve 
understanding of MDs and ultimately the quality of life of people and 
their families living with MD. Individuals with MDs frequently report 
pain and fatigue, but studies have largely been conducted in clinic-
based populations and included the three most common MDs. Population-
based studies are needed to describe the frequency and management of 
pain and fatigue and their impact on the lives of individuals with 
various types of MD.
    The purpose of the proposed study is to describe the epidemiology 
of COVID-19 and flu and the experience with pain, fatigue, pregnancy, 
and infertility for adults living with MD who are identified through MD 
STARnet. Results generated from the study will provide a better 
understanding of: (1) the occurrence, testing, treatment and severity 
of COVID-19 in relation to MD; (2) vaccination status and reasons for 
not receiving COVID-19 and flu vaccinations; (3) the frequency, 
intensity, and management of pain and fatigue; and (4) the effect of 
having MD on pregnancy and fertility on adults living with MD. 
Ultimately, this information can be used to develop interventions that 
improve the lives of people with MD and their families.
    CDC requests OMB approval for an estimated 974 annual burden hours. 
There are no costs to respondents other than their time to participate.

                                        Estimated Annualized Burden Hours
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                                                                                      Average
                                                     Number of       Number of      burden per     Total burden
      Type of respondents           Form name       respondents    responses per   response  (in       hours
                                                                    respondent        hours)
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Adult males 18 and over.......  MD STARnet Male            1,794               1           15/60             449
                                 Questionnaire.
Adult females 18 and over.....  MD STARnet                 1,574               1           20/60             525
                                 Female
                                 Questionnaire.
Total.........................  ................  ..............  ..............  ..............             974
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Jeffrey M. Zirger,
Lead, Information Collection Review Office, Office of Scientific 
Integrity, Office of Science, Centers for Disease Control and 
Prevention.
[FR Doc. 2022-20601 Filed 9-22-22; 8:45 am]
BILLING CODE 4163-18-P