Deafness Research and Education Across Mid-Michigan
The DREAM-M Project
A team of scientists at Michigan State University has worked with community members in a compact mid-Michigan area for more than a decade to identify critical information related to genetic hearing loss.
Rachel Fisher, professor of Pediatrics and Human Development, Karen Friderici, professor of Microbiology and Molecular Genetics, and Jill Elfenbein, associate professor of Communicative Sciences and Disorders, assembled a plan in the mid-1990s when they discovered several individuals who shared a form of congenital deafness, ranging from mild to profound, in a close-knit farmland community.
Collecting family histories, the research team discovered the hearing loss involved five related families in the area, where residents were predominantly of German immigrant population descendants.
Looking to form a model for community-based research that was sensitive and effective, the MSU research team worked with deaf and hard of hearing individuals, their families, and members of the community to form two community advisory boards, an ethics committee and a research advisory committee.
The researchers talked with the local doctor, school board, and church leadership to communicate how they would collect the data needed to identify the reasons for the congenital hearing loss that kept occurring in the community. Blood tests, hearing tests, and genealogical records were important research components of the collaboration. Today there is a database of more than 27,000 individuals, including the original German immigrant families, their ancestors and descendents.
The work by Drs. Fisher, Friderici, and Elfenbein has resulted in identifying several mutations in two different genes that cause the inherited deafness within these families. The study identified a novel mutation of the connexin 26 (Cx26) gene. Mutations in this gene result in the most common forms of deafness.
In recent years the genes for many forms of hereditary congenital deafness have been localized on the human genome by genetic linkage techniques. One of the issues with this particular diagnosis is that the hearing impairments begin at a very early age, often in infancy and before language skills development. Therefore, early detection and treatment are beneficial for patient and family support.
Rose M. Smith, a founding member of the community advisory board, was an early supporter of the work by Fisher, Friderici, and Elfenbein.
"Better testing means earlier detection and can give parents an earlier start for raising a deaf or hard of hearing child," said Smith. "Everyone at MSU was so helpful. Dr. Fisher taught us the intricacies of genetic study, made it understandable, and helped us understand what information was important to the project. Family relations are strong here, and many people were willing to share information if it was going to help family members now and way into the future."
"In the ten and a half years I've served on the board I have learned that there are at least 100 different types of genetic hearing loss, and more are being discovered as science grows and develops. And now that we have worked with the DREAM-M Project, we are enthusiastic in the community about identifying other health factors such as Alzheimer's, asthma, and different types of cancer. Maybe the work we are doing now with Michigan State University researchers will help our grandchildren and their children lead healthier lives."
Strong and Ongoing Community Partnership with Michigan State University
The work with the DREAM-M project has led to development of a new and innovative partnership between this community and MSU researchers. Named CoSAGE – Community-based cooperative for Studies Across Generations, the goal is to discover genetic factors within this community that contribute to common diseases such as Alzheimer's and breast cancer and translate the information collected into meaningful interventions that improve the lives of community residents and their families
CoSAGE is led by Brian Schutte, associate professor of microbiology and molecular genetics and his wife Debra Schutte, associate professor of nursing, with continued collaboration by Drs. Fisher, Friderici, and Elfenbein. The goals are similar to the community-based research model formed with the DREAM-M Project: conduct community interviews and collect health and genetic information. After analysis, the findings will be discussed with community participants.
"Serving on the community advisory board has been such a good experience, I have learned so much," Smith says. "The researchers are so knowledgeable and yet can really share and relate that knowledge to people in our community. It has made me, and others, willing to learn even more about how we can contribute to these efforts."