[Federal Register Volume 71, Number 36 (Thursday, February 23, 2006)]
[Notices]
[Pages 9348-9349]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E6-2584]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-06-04JZ]


Agency Forms Undergoing Paperwork Reduction Act Review

    The Centers for Disease Control and Prevention (CDC) publishes a 
list of information collection requests under review by the Office of 
Management and Budget (OMB) in compliance with the Paperwork Reduction 
Act (44 U.S.C. Chapter 35). To request a copy of these requests, call 
the CDC Reports Clearance Officer at (404) 639-4794 or send an email to 
[email protected]. Send written comments to CDC Desk Officer, Office of 
Management and Budget, Washington, DC or by fax to (202) 395-6974. 
Written comments should be received within 30 days of this notice.

Proposed Project

    Preventive Cardiac Health Care Knowledge, Beliefs, and Behaviors in 
Female Carriers of Duchenne/Becker Muscular Dystrophy--New--National 
Center on Birth Defects and Developmental Disabilities (NCBDDD), 
Centers for Disease Control and Prevention (CDC).

Background and Brief Description

    Duchenne/Becker Muscular Dystrophy (DBMD) is the most common form 
of fatal muscular dystrophy in children. It affects about 1 in 3,500 
boys. Although almost all cases of DBMD are diagnosed in young males, 
the genetic condition that causes DBMD is carried by females. Today, 
there are about 40,000 female DBMD carriers in the United States. 
Females who carry this genetic condition generally do not have 
symptoms, but some may experience muscle weakness and fatigue. 
Sometimes, they may also develop heart problems that are characterized 
by shortness of breath or an inability to do moderate exercise. The 
chance that a female carrier will develop heart problems is unknown, 
but these heart problems are serious and can be life threatening. To 
learn more about the heart health behaviors of adult female DBMD 
carriers, National Center on Birth Defects and Developmental 
Disabilities (NCBDDD), CDC proposes to conduct a national survey.
    This one-time survey will be mailed to about 7,000 women who are on 
mailing lists maintained by DBMD advocacy groups (Group 1) or are known 
by someone on one of the lists (Group 2). The data will be treated in a 
confidential manner. Women will be eligible to complete the survey if 
they are at least 19 years old and have given birth to a son with DBMD 
or been told that they definitely or probably carry a genetic change 
for DBMD. To comply with requests from the advocacy community, the 
questionnaire will be provided to friends, relatives, and acquaintances 
of women on the above mailing lists who meet all study eligibility 
criteria and personally initiate contact with the study office about 
possible participation (Group 2). All study materials, including the 
questionnaire, will be available in English and Spanish. Respondents 
will also be able to complete an electronic version of the survey 
accessed via the World Wide Web. It will take each participant about 5 
minutes to read the survey cover letter and about 30 minutes to 
complete the survey. Group 2 women will also need to complete a 5-
minute telephone interview to provide their mailing address to the 
study office. Prior to receiving the survey, Group 1 women will receive 
an initial approach letter that will take about 5 minutes to read. We 
expect that 80% of the women who receive a questionnaire will complete 
the survey, for a total of 5,600 respondents.
    Survey participants will be asked about social and psychological 
aspects of their genetic carrier status, their sources of social 
support, their awareness and knowledge of the link between carrier 
status and heart health, issues about access to specialized cardiac 
health care, and sources of health information that they find 
trustworthy, accessible, and understandable. Postage and a return 
envelope will be provided for participants who choose to complete and 
return their survey by mail. There are no costs to the respondents 
other than their time. The total estimated annualized burden hours are 
3,968.

                                        Estimated Annualized Burden Table
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                                                                                                      Average
                                                                     Number of       Number of      burden per
                     Type of data collection                        respondents    responses per    respondent
                                                                                    respondent      (in hours)
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Initial approach letter (Primary sample only)...................           6,000               1            5/60
Telephone screen (Secondary sample only)........................           1,000               1            5/60
Survey cover letter with survey (Primary & Secondary samples)...           7,000               1            5/60
Survey sections 1 through 5.....................................           5,600               1           30/60
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[[Page 9349]]

    Dated: February 15, 2006.
Joan F. Karr,
Acting Reports Clearance Officer, Centers for Disease Control and 
Prevention.
 [FR Doc. E6-2584 Filed 2-22-06; 8:45 am]
BILLING CODE 4163-18-P