By Bill Hendrick
Erin Scott is happy that her 2-year-old daughter, Ansley, finds so much joy inside a plastic playhouse in a Sandy Springs medical building, because it could be the toddler’s home away from home for 15 years.
Ansley, like 461 other children born at nearby Northside Hospital, was selected to take part in a scientific study aimed at finding a cure for Type 1 diabetes, a mysterious disease for which there is no cure. It afflicts more than 1 million Americans.
Ansley doesn’t have the disease and might never come down with the autoimmune disorder, often called juvenile diabetes.
But she does have genes that have been identified as possible markers for the disease. Her parents were given the news soon after her birth and were asked to sign her up for the study, known as TEDDY, an acronym for The Environmental Determinants of Diabetes in the Young.
More than 43,000 babies born at Northside have been screened for two of the genes thought to be associated with Type 1 diabetes. Nearly 1,600 have been found eligible for the study, and the families of 462, including the Scotts, have agreed to take part over 15 years.
Those who enroll are taking on a major commitment on a voluntary basis.
Parents must keep meticulous journals of what their children eat and when they get sick or vaccinated and must provide stool samples and fingernail clippings to scientists. In addition, the study protocols call for Ansley and the other enrolled children to give blood several times a year in offices of the Medical College of Georgia at 1100 Lake Hearn Drive.
That’s where Ansley was frolicking one recent day in a large playroom with her brother, Aidan, 4, and her mom, Erin, 32.
The odds are in Ansley’s favor.
A child with the suspect genes but no first-degree relatives with Type 1 diabetes has a 3 percent risk of developing the disease, said Leigh Steed, a registered nurse and research coordinator for the TEDDY study in Atlanta.
The risk is 14 in 100 for children with the genes who also have a first-degree relative — father, mother, sister or brother — diagnosed with Type 1 diabetes.
Ansley has no first-degree relatives with Type 1 diabetes. But her parents agreed to enroll her, in part because Erin has a friend from college who has Type 1 diabetes.
People who have the disease must test their blood-sugar levels multiple times a day and give themselves insulin injections.
“She’s perfectly healthy, with two children of her own, but she has to be a lot more thoughtful about what she does all the time,” Erin said of her friend. “A cure needs to be found, and the TEDDY study may find it. When they asked us to take part, there was no hesitation on my part, even though it’s a very hard thing, because it’s the right thing to do. I’ve seen firsthand what people with Type 1 have to go through. This is the only way they are going to find a cure.”
Four times a year, Ansley gives blood so scientists can monitor it for antibodies specific to the cells that make insulin, Steed said.
“Northside is the largest birthing center in the country,” she said. “Being there is why we built our offices here.”
Most likely, Erin said, “Ansley’s never going to get it. And though we’ve committed for 15 years, she may decide to get out later.”
“Retention of enrollees is an ongoing challenge in any longitudinal study,” Steed said. “We tell the families to take it one visit at a time.”
Steed herself has Type 1 diabetes, as does her 20-year-old son, Austin. Her husband, Dennis, is a physician who specializes in diabetes and similar disorders and is on staff at Northside.
“The study is important,” Steed said. “The disease affects every part of the body. We just want to stop it.”
Scientists have determined that “you can’t eat your way into an autoimmune disorder” like Type 1 diabetes, and despite what many parents tell their children, eating candy doesn’t cause the disease, Steed said. “The cause is a mystery.”
Type 1 diabetes accounts for 5 to 10 percent of diagnosed diabetes in the U.S. It develops most often in children and young adults but can appear at any age. About 24 million Americans have Type 1 or Type 2 diabetes, including 17.9 million who have been diagnosed.
In Type 1, the body doesn’t produce insulin, a hormone needed to convert sugar, starches and other food into energy. Type 2 diabetes, which is far more common, occurs when the body either stops producing enough insulin or fails to process it properly. It usually shows up in adults and is thought to be linked to obesity.
The TEDDY project started enrolling patients in 2004 and is being financed with a $10 million, five-year grant renewal from the National Institutes of Health. Dr. Jin-Xiong She, director of the Medical College of Georgia’s Center for Biotechnology and Genomic Medicine, is the principal TEDDY investigator.
About 66,000 children from Georgia and Florida have been screened and some 700 enrolled in the international effort, which also includes research sites in Colorado and Washington, as well as Finland, Sweden and Germany.
Worldwide, scientists hope to screen 360,000 and enroll 7,800 children.
“Without the dedication of the participating families, we could not do this,” She said. “It’s a huge commitment. They are trying to do everything they can to help us find a cure for diabetes.”
Although TEDDY screens for just two genes associated with Type 1, scientists think at least a dozen and perhaps twice that many increase the risk of developing the disease.
She said genetic factors alone probably do not cause the disease, but there are likely environmental triggers as well. He hopes one day to be able to tell parents of children with at-risk genes what to do to keep their offspring from developing Type 1 diabetes.