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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.
|Type of data collection||Number of respondents||Number of responses per respondent||Average burden per respondent (in hours)|
|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|
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