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Heart Health Matters for Duchenne Muscular Dystrophy (DMD) Carriers Too—New—National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC).
Background and Brief Description: Duchenne Muscular Dystrophy (DMD) is the most common form of fatal muscular dystrophy in children. It Start Printed Page 51845affects about 1 in 3,500 boys. Although almost all cases of DMD are diagnosed in young males, the genetic condition that causes DMD is carried by females. Today, there are about 40,000 female DMD 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 DMD carriers, CDC, National Center on Birth Defects and Developmental Disabilities proposes to conduct a national survey.
A large sample of adult female carriers of DMD will be recruited for the study from the mailing lists of local, regional, and national organizations that work with DMD families. Approximately 1,500 individuals who agree to participate in the study will complete a confidential, one-time, self-administered questionnaire that will be mailed to their homes and will take approximately 30 minutes to complete. Respondents will also be given the option of responding to an electronic version of the survey accessed via the World Wide Web. 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 genetic 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.
There will be no costs to the respondent. Postage and a return envelope will be provided for participants who choose to complete and return their survey by mail.
|Respondents||Number of respondents||Number of responses per respondent||Average burden per response (in hrs.)||Total burden hours|
Dated: August 12, 2004.
Director, Management Analysis and Services Office, Centers for Disease Control and Prevention.
[FR Doc. 04-19216 Filed 8-20-04; 8:45 am]
BILLING CODE 4163-18-P