Introduction DBMD has an estimated prevalence of 1/3500 male births. Worldwide, this estimate varies, likely due to differences in diagnostic criteria, ascertainment, and survival. To date, no U.S. population-based DBMD prevalence data by race/ethnicity have been published.
Methods In 2002, the Centers for Disease Control and Prevention established the MD STARnet to conduct population-based DBMD surveillance in four U.S. sites. Each site conducts active surveillance to identify males with DBMD born since January 1982. Using these data, we calculated DBMD prevalence by race/ethnic subgroups and birth intervals (1986–1990; 1991–1995; 1996–2000). Prevalence was calculated as: [number of DBMD males age 5–9 years/number of male residents, age 5–9 years]. With the average age at DBMD diagnosis about 5 years, census data used to identify male residents per birth interval were those published for the following interval (eg, 2005 estimates used for 1996–2000 births).
Results From 1986 to 2000, 321 DBMD males resided in an MD STARnet site during one or more birth intervals, which produced a prevalence of 1/5000 residents. Race/ethnic-specific prevalence tended to be higher for Hispanics than non-Hispanic whites or African-Americans. Prevalence tended to be decreased for the most recent birth interval.
Conclusion Our results are the first U.S. population-based report of race/ethnic-specific DBMD prevalence. Expansion of MD STARnet to two additional sites will permit computing prevalence for additional race/ethnic subgroups and birth intervals.
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