Notice2022-20601
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
September 23, 2022
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 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.
Full Text
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<title>Federal Register, Volume 87 Issue 184 (Friday, September 23, 2022)</title>
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[Federal Register Volume 87, Number 184 (Friday, September 23, 2022)]
[Notices]
[Pages 58095-58096]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[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:
<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: 404-639-7118;
Email: <a href="/cdn-cgi/l/email-protection#412e2c23012225226f262e37"><span class="__cf_email__" data-cfemail="2f40424d6f4c4b4c01484059">[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
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
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