Dr. Chris Cunniff, professor and chief of the section of medical and molecular genetics in the department of pediatrics at the University of Arizona College of Medicine-Tucson and a researcher with the Steele Children's Research Center, has received a three-year, $1.35 million grant from the U.S. Centers for Disease Control and Prevention.
The project, Arizona Muscular Dystrophy Surveillance Tracking and Research Network, or AZ MD STARnet, enables Cunniff and his team, which includes John Meaney and Jennifer Andrews, to continue population-based surveillance and research of Duchenne/Becker muscular dystrophy, or DBMD, and to expand surveillance to identify individuals with other muscular dystrophies throughout Arizona.
Four other sites are participating in the study: Colorado, Georgia, Iowa and western New York.
The AZ MD STARnet has been conducting DBMD surveillance since 2002 and has published findings on the gene abnormalities that cause these conditions and the timing of their diagnosis. Patients and their families also have provided extensive information about their families' experiences through in-depth interviews.
This new award will build upon the previous successes of AZ MD STARnet by expanding surveillance to a group of seven other muscular dystrophies, many of which are seen primarily in adults. In this way, the investigators will try to determine how common these conditions are in our state and determine the health concerns of individuals with these conditions and their families.
A second focus of this award is to survey families of boys with DBMD to see how well they are able to transition their care from pediatric providers to those who care primarily for adults. This topic is of particular importance as improved treatments for muscular dystrophy result in a greater survival and improved outcomes for these patients.
"We will interview families in the process of transitioning the care of their child with muscular dystrophy from a pediatrician to an adult medical provider to examine the medical needs of these patients," Cunniff said. "We will continue to investigate important issues for affected boys, such as how steroid use may affect heart and lung function, why boys with muscular dystrophy have fractures, and what treatments appear to provide the best outcomes."
Meaney added: "Ultimately, we hope our work will lead to the identification of additional interventions that can improve the outlook for this group of boys."