3/13/2009 - Vanderbilt's Eskind Pediatric Diabetes Clinic is finding success at overcoming one of clinical research's most daunting challenges — convincing people to participate in studies.
The Type 1 Diabetes Genetics Consortium — an international, multi-center effort to identify genes that determine an individual's risk for type 1 diabetes — recently named the clinic the top international enrollment site for a population that's particularly difficult to attract: “control” subjects to compare with the thousands of people with type 1 diabetes being enrolled in the study worldwide.
Specifically, Eskind study coordinators had to recruit African Americans and Mexican/Central Americans with no personal or family history of type 1 diabetes, and encourage them to give DNA samples.
They have 250 participants, and the list is still growing.
“We had to overcome mistrust from the old days of research, especially for African-American participants, and we had to overcome misunderstandings about genetics studies. People joked about whether we were going to take their DNA and clone them,” said Margo Black, R.N., the Type 1 Diabetes TrialNet Research Coordinator at Vanderbilt. “But it was a very friendly, grassroots approach. Once they understood, they were willing.”
To thank the participants in this control portion of the study, the Vanderbilt team threw a party recently and brought along not just food and beverages, but also children with type 1 diabetes. They shared information and offered themselves for any questions the participants might want to ask.
“Part of our success had to do with engaging these volunteers,” said Eric Pittel, a research analyst in the study, who also has type 1 diabetes. “We toured them through the pediatric diabetes clinic. They could hear from my personal experience about living with the disease and learn more. They didn't know, for example, that type 1 diabetes is increasing in their own ethnic groups at a rate of 3 percent to 5 percent a year.”
Carrie Frierson was the first person to sign up for the study. She met Black at a church play.
“I sold them their tickets and they gave me some information,” said Frierson. “I was surprised they would want me to participate since I don't have anyone in my family with type 1 diabetes. Besides, I hate needles.”
But she signed up anyway and offered up a sample of her blood.
“I like to help where I can,” she said. “They say it's increasing in African-American children and it makes you want to know what's going on.”
Black said she believes reaching out into the community with more than just fliers helped with the project's success.
“But we give the credit completely to our participants. All we had to do was to take care of that first person. It was those first volunteers who spread the word for us and encouraged more people to sign up,” Black said.
To learn more about this study on the genetics of type 1 diabetes in African Americans and Mexican/Central Americans, call 936-1149 or email: diabetesresearch@van