SUNDAY, Oct. 16, 2005 (HealthDay News) -- Patients and families affected by muscular dystrophy now have a new Web site to help them collect and share information from others coping with the illness.
The site, www.UFAnswers.org, was designed by Hans van Oostrom, a professor of anesthesiology and biomedical engineering at the University of Florida. It serves as a locus for voluntary submissions from those affected by personal experiences, lifestyles and the progression of muscular dystrophy. Families who have lost loved ones to the disease can also contribute their experiences to help others going through a similar ordeal.
"The reason that it is so important to identify things that may offer a margin of benefit, is that the realistic time horizon for a real treatment or cure is within decades, maybe sooner," Dr. Dietrich Gravenstein, an anesthesiologist associated with the University of Florida's College of Medicine, said in a prepared statement.
Muscular dystrophies -- genetic diseases characterized by progressive weakness of the muscles that control movement -- affect between 50,000 and 250,000 at any one time, according to the Muscular Dystrophy Family Foundation. Duchenne muscular dystrophy affects one out of every 3,500 to 5,000 boys, and most patients become wheelchair-dependent by 12, respiratory-dependent by their teens, and don't live past their 20s.
Although names must be given for verification purposes, the Web site's developers say individual information would be kept confidential. The site is a data warehouse that uses advanced information science techniques to collect and classify data.
"Anecdotal information is unscientific," Gravenstein added, "but by gathering it in great numbers, we hope to pinpoint factors that are causally related to an improved disease course."
Pat Furlong, president of Parent Project Muscular Dystrophy, agreed.
"Without exception, the families, researchers, physicians and the health-care community would benefit from the ability to access information relevant to a certain condition," he said in a prepared statement.
The database is funded by the I. Hermann Anesthesiology Foundation.
More information
To learn more about muscular dystrophy, visit the Muscular Dystrophy Association.
