February 1, 2008
AUTISM NETWORK USES MDLOGIX INTERNET REGISTRY SYSTEM TO GATHER DATA FROM FAMILIES
Creates World’s Largest Repository of Autism-Related Research Data
Baltimore, MD---The Interactive Autism Network (IAN), a national Web-based autism registry and research management project established by the Kennedy Krieger Institute and funded by Autism Speaks, is built on mdlogix's software system. The mdlogix system was created to easily register patients online and gather data for research or public health activities, regardless of the disease or disorder. Since the IAN Project publicly launched in April 2007, it has become the largest such registry in the world with more than 20,000 participants.
“The mdlogix system is helping us transform the face of autism research as we know it,” said Paul Law, MD, MPH, director of the IAN Project at the Kennedy Krieger Institute in Baltimore, Maryland. “The fact that IAN has already become a vital resource for parents and researchers, so early in its lifespan, bodes extremely well for the potential of this project, and ultimately, to the pursuit of answers in autism.”
The IAN Project’s goal is to gather research data, collected from parents, on children diagnosed with an autism spectrum disorder (ASD) to better understand the disease, and help parents and researchers come together on a shared platform, the Internet.
Through IAN (www.ianproject.org) parents can participate in research over the Internet that is secure and private. The mdlogix Subject & Protocol Registry module is designed to facilitate collection of scientifically rigorous data from research subjects in the least burdensome way possible. It was built to accommodate the hectic lives of parents within the constraints of medical research. Parents can self register and consent, then are asked to complete questionnaires particular to themselves and their children.
“We designed the system with parents in mind and coupled this with our many years of medical research knowledge and experience,” mdlogix CEO Aaditya Goswami said. “Parents are able to access a questionnaire from any computer with an Internet connection, and they can save their responses and return to a questionnaire if they are interrupted, which so often happens in families with autistic children.”
The data gathered helps ASD researchers in their search for potential causes, treatments, and a possible cure. With the mdlogix Case Report Forms (CRF)-Electronic Data Capture (EDC) module, researchers can build CRFs quickly and deploy them for use.
The U.S. Centers for Disease Control and Prevention released data in 2007 that found about 1 in 150 children in the United States had an ASD. The cause or causes are still unknown.
The Subject & Protocol Registry and Case Report Forms-EDC are 2 of the 7 modules that make up the market-leading mdlogix Clinical Research Management System (CRMS). “Our company is using technology to accelerate clinical research and engaging patients in the process through registries,” Goswami said. “Autism is a complex disorder. Since we succeeded in building a user-friendly public registry for autism, I know we can do so for any disease or disorder domain.”
Ultimately, as envisioned by Allen Tien, MD, MHS, mdlogix founder, president, and research director, “Patients and their families, professional care providers, public health officials, and medical researchers will be linked together to improve health through collaboration and the application of science.”
About mdlogix
mdlogix is a rapidly growing company established in 1997 and headquartered in Baltimore, Maryland. It is committed to accelerating clinical research by providing a portfolio of enterprise-level software products and services, focused on its market-leading Clinical Research Management System (CRMS). mdlogix has the proven ability to deliver flexible, configurable software products and professional services to world-leading research institutions and organizations. For more information, please visit our company Web site, www.mdlogix.com or call 410-828-8948.
About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 13,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.