Muscular Dystrophy Project Other MD STARnet Sites |
 |
|
Arizona
Arizona MD STARnet is led by two groups: 1) the Section of Medical and Molecular Genetics in Pediatrics at University of Arizona College of Medicine; and 2) the University Center on Disabilities at the University of Arizona. Chris Cunniff, MD, is the Principal Investigator. Jennifer Andrews, MBA, is the Program Coordinator. The team works on many DBMD projects. One study looks at the kinds of DNA testing used to diagnose DBMD. Another study looks at heart function in children with DBMD. The researchers are almost finished with a project on the use of devices that improve independence and quality of life. This is called assistive technology. |
Colorado
The Colorado Department of Public Health and Environment and The Children’s Hospital in Denver work together on MD STARnet. Lisa Miller, MD, MSPH, and Dennis Matthews, MD, are the Principal Investigators. Dr. Miller leads the Surveillance and Research Committee of MD STARnet. Dr. Matthews heads the Clinical Review Committee. MD STARnet is part of the Colorado Responds to Children with Special Needs program in the public health department. This program studies and helps to prevent conditions that affect children. These conditions include a variety of birth defects, autism, fetal alcohol syndrome, and muscular dystrophy. The Children’s Hospital Muscle Clinic in Aurora serves children and teens. The clinic is studying the use of Alendronate to treat weak bones in boys with Duchenne muscular dystrophy
(DMD). Bone fractures are common in boys with DMD as they get older and as a result of steroid use. The goal is to determine if Alendronate with vitamin D and calcium improves bone mineral density and reduces the number of bone fractures in boys with DMD.
Hawaii
This is a collaborative project involving representatives from Department of Health Programs (Birth Defects, Children with Special Health Needs, and Early Intervention Services), Muscular Dystrophy Association (MDA) clinics, Shriners Hospital for Children, Tripler Army Medical Center, Kapiolani Medical Center, Queen’s Medical Center, private neuromuscular clinics, and other pediatric and neurological practices located in Hawai‘i and Guam. Sylvia Au, M.S., C.G.C., is the Director of the Hawaii MD STARnet project. The aim of this project is to increase the number of Asian and Pacific Island participants within the existing study population. Data gathered by project staff will characterize the complications and long term outcomes of individuals with DBMD who are geographically isolated and may face unique barriers. In addition, the project will describe the history and outcome of individuals with DBMD who receive different levels of medical and preventative care while developing a long term surveillance system for these families. Finally, the culture of Hawai`i and Guam may provide insight into unique methods of caring for children and families with DBMD.
Iowa
The Iowa MD STARnet program is based at the University of Iowa. Staff members come from the Colleges of Public Health, Medicine, and Nursing. Paul Romitti, PhD, and Katherine Mathews, MD, lead the program. Dr. Romitti has experience in surveillance and database management. Dr. Mathews is an expert in neuromuscular diseases in children. Iowa serves as the data coordinating center for MD STARnet. They are interested in quality of life, psychosocial adjustment, and impact of DBMD on the family. Iowa conducted a pilot Needs Assessment in their state. They are taking the lead in finalizing this tool for use throughout the MD STARnet population.
New York
The New York State Department of Health and the University of Rochester Department of Neurology work together on New York MD STARnet. Charlotte Druschel, MD, MPH, and Shree Pandya, PT, MS, are the Principal Investigators. Dr. Emma Ciafaloni is the MD STARnet clinician. Dr. Richard Moxley provides guidance for the New York MD STARnet program. Deborah Fox, MPH, is a Co-Investigator from the New York State Department of Health. The New York team is in charge of training staff to collect information from medical records. They lead quality monitoring for the network. They also study delays in diagnosis for boys with DBMD. They hope to share their findings with doctors, physical therapists and specialists to help reduce such delays. The group is interested in care patterns across states for patients with DBMD. They continue to look at benefits and side effects of long term steroid treatment.
Georgia
CDC is working with the Georgia Division of Public Health. Together they run the Georgia MD STARnet program. Georgia was added as the fifth MD STARnet state in 2006. One reason Georgia was chosen as a site was to add diversity to the MD STARnet population. They are interested to see if there are differences in treatment and services among ethnic and racial groups. It is important to find all the people who have DBMD in Georgia to find out how common DBMD is. So far the Georgia team has found many people with DBMD by working with larger clinics in Georgia, including those in Atlanta, North Georgia, and Augusta. Their next goal is to find people with DBMD in South Georgia. These people might get care from smaller clinics in Georgia or from larger clinics in nearby states like Florida. If you live in Georgia and want to be a part of MD STARnet, please contact the Georgia MD STARnet study coordinator.
More specific inquiries about these data or CRCSN are welcome and can be addressed to:
to write or call:
Colorado Responds to Children with Special Needs
Colorado Department of Public Health and Environment
4300 Cherry Creek Drive South, DCEED-CRC-A3
Denver CO 80246-1530
Phone: (303)692-2700
Fax: (303)782-0904