Most people will never come into contact with Duchenne/Becker muscular dystrophy, because of its rarity, affecting one of every 3,500 boys.
Despite its rare occurrence, Dr. Chris Cunniff and Jennifer Andrews, of the University of Arizona Steele Children’s Research Center, think it’s important for the average person to understand.
“It can be looked at as a model for chronic disease that tends to get worse over time,” Cunniff says.
Cunniff and Andrews run a project called Arizona Muscular Dystrophy Surveillance Tracking and Research Network, or AZ MD STARnet for short. The project is part of a national effort to find how many people are living with DBMD, a type of muscular dystrophy that primarily affects boys, and to figure out medical treatments that best help.
Thanks to a $1.35 million from the U.S. Centers for Disease Control and Prevention, Cunniff and Andrews and fellow researcher John Meaney can now expand their work on DBMD.
“It’s a pilot test to see if we can take our same system and then collect information on additional muscular dystrophies,” Andrews says.
The grant will also allow their team to continue one-year of DBMD surveillance and further create an overall evaluation of the entire AZ MD STARnet project to determine strengths and weaknesses.
The project is connected to work in Colorado, Georgia, Hawaii, Iowa and New York.
Cunniff and Andrews have been part of this research team since 2002, since then they have made gains in muscular dystrophy research. Their team found new benefits for steroids to help patients’ hearts stay healthier and found that the estimate given for the number of people living with DBMD was incorrect.
But, Cunniff notes that with success come challenges.
“Expertise has generally been in the pediatric caregiver population,” he says. “One of those challenges is how best to transition over to care models where [patients] are being cared for by people who primarily treat adults.”