Wilmington, DE – Nemours/Alfred I. duPont Hospital for Children recently announced the funding for two research projects by the Osteogenesis Imperfecta Foundation (OIF). Osteogenesis Imperfecta (OI), commonly referred to as “brittle bone disease,” is a genetic disorder characterized by fragile bones that break easily. A person is born with this disorder and is affected throughout his or her life time. Because mild OI often goes undiagnosed, it is difficult to know exactly how many Americans are affected with OI. The range is thought to be between 25,000 and 50,000 people.
The first project is a 2-year study exploring the use of an FDA approved vibration platform in children with mild, Type 1 OI. “This device has previously been shown to increase bone mineral density in post-menopausal women and disabled children,” explained Michael Bober, MD, pediatric geneticist at Nemours/Alfred I. duPont Hospital for Children. “This study at the duPont Hospital will look at whether or not this non-invasive technique can lead to improvement in bone strength in the pediatric population in children with Osteogenesis Imperfecta.”
“My job is as a surgeon, but a big part of that is also sharing with families the decisions the will help give their son or daughter a childhood and sharing the thrills, joys and pains of those developments,” said Richard Kruse, DO, an orthopedic specialist at Nemours/Alfred I. duPont Hospital for Children. “To explore this cutting edge technology in the hopes of improving these remarkable children’s quality of life is very exciting.”
Nemours is once again partnering with the University of Delaware’s College of Health Sciences for this research study. “Christopher Modlesky, PhD and his pilot studies with daily vibration treatment were instrumental in bringing the vibration platform here,” said Dr. Bober.
“Studies such as this that allow collaboration between the University of Delaware and its biomedical and clinical partners—in this case the duPont Hospital—are representative of the translational research fostered by the Delaware Health Sciences Alliance (DHSA),” explained Modlesky, who is also an Assistant Professor in the University of Delaware’s Department of Health, Nutrition, and Exercise Sciences. “The DHSA looks to support and expand these ‘bench to bedside’ collaborations to develop new diagnostics, preventive therapies, and interventions.”
The duPont Hospital has also become part of OIF’s Linked Clinical Research Centers (LCRC), collecting and analyzing health information from adults and children with OI. Successful natural history studies require a large number of participants. Because OI is so rare, it is impossible for longitudinal studies to take place in one location or even in one region. To accomplish their goal, the OIF has selected and funded linked centers, where all data is collected in exactly the same way and entered into an LCRC secure, anonymous data base.
