MD STARnet Asks Parents
About Care, Technology in DMD, BMD

Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet), under the auspices of the U.S. Centers for Disease Control and Prevention (CDC), is actively seeking participants for two studies.

Investigators in the first, the Palliative Care Project, want to interview parents of children with Duchenne muscular dystrophy (DMD) to determine the needs they have and the services of which they’re aware. “Palliative” care means care that is life-improving but not curative.

Participants must live in Arizona, Colorado, Iowa or western New York and be willing to give the researchers a 30-minute telephone interview, for which they’ll be compensated.

The study, which is funded by the CDC and the University Centers on Disabilities, seeks to obtain parental input about needs and issues in palliative care for DMD.

The second study, the Assistive Technology Project, is for parents of children and young men ages 5 to 21 with DMD or Becker muscular dystrophy (BMD) who live in Arizona.

This study, funded in part by MDA, will assess the use families make of assistive technology and investigate the effects of technology on health and well-being.

Parents, who will be compensated for their time, will be asked to complete a written questionnaire, which will take about an hour, and participate in a 10-minute interview at their son’s next clinic visit.

Contact Jennifer Andrews at (520) 626-6816 or jandrews@peds.arizona.edu for information about the above two studies. See also www.ahsc.arizona.edu/acainfo/dbmd/, the Arizona Health Sciences Center’s STARnet Web site.

For more information about these and other CDC-supported DMD and BMD studies, see the CDC STARnet Web site at www.cdc.gov/ncbddd/duchenne/cdc.htm. You can contact the CDC about these studies at (800) 311-3435, 7, or send e-mail to dmd@cdc.gov.