Research participant Loren Kirkpatrick, right, has worked with Janie Lipps, MSN, and Vanderbilt’s Diabetes Control and Complications Trial since its inception in 1983. (photo by Daniel Dubois)
Diabetes trial sets bar high for retaining research subjects
Loren Kirkpatrick has been enrolled in the Diabetes Control and Complications Trial (DCCT) at Vanderbilt’s Diabetes Center for nearly half of her adult life.
Diagnosed with type 1 diabetes in 1982 at age 34, Kirkpatrick enrolled as the study’s first patient in 1983. Now Kirkpatrick has become the symbol of what Vanderbilt researchers hope is a new trend: a personal and family legacy of dedicated participation in clinical research.
Kirkpatrick, her two children, their spouses and Kirkpatrick’s four grandchildren have all participated in Vanderbilt diabetes research. She credits the DCCT research team with offering her something her personal physicians did not — a measure of control.
“It was a lot of work, monthly visits and weekly calls, but if something happened and your blood sugars began to rise, they talked with you about it, not at you. I learned how to take care of myself and have maintained excellent blood sugar control,” Kirkpatrick said.
Part of the reason for Kirkpatrick’s dedication, she says, is the dedication of her research advanced practice nurse, Janie Lipps, MSN, research coordinator for Vanderbilt’s DCCT since its inception.
Vanderbilt’s trial boasted a 100 percent retention rate until it ended in 1993 and transitioned into a follow-up study, which also boasts 100 percent retention. Lipps said that at the core of this nearly 30-year success is a philosophy of the patient as a partner in research, rather than a subject.
“There is a bit of reluctance within the medical and research community to embrace the philosophy of collaborating with the patient. Our team has always had a sense of appreciation, and over the years we have hosted a number of gatherings to thank our participants,” Lipps said.
Lipps and Margo Black, R.N., coordinator of Vanderbilt’s TrialNet type 1 diabetes prevention studies, were asked to attend an exclusive National Institute of Diabetes and Digestive and Kidney Diseases meeting last September to discuss recruitment and retention.
Black’s TrialNet Diabetes Prevention studies also have a very high retention rate.
“We have learned a lot from Janie’s work. Without question, Janie (Lipps) is a legend in diabetes research at Vanderbilt. The DCCT study has saved lives,” Black said.
Kirkpatrick’s grandson, Gus, continues to participate in TrialNet.
The DCCT followup study, called Epidemiology of Diabetes Interventions and Complications (EDIC), is assessing diabetic complications such as cardiovascular disease, stroke, eye, kidney and nerve diseases, and is funded through 2016.