With Type 1 diabetes on the rise, researchers are stepping up efforts to screen patients’ family members, who are at higher risk of also getting the disease, the Informed Patient column reports.
More than 100,000 relatives have been screened through a free program offered by Diabetes Type 1 TrialNet, a research network of 18 centers world-wide seeking volunteers to participate in its studies of ways to prevent, delay and cure Type 1, long known as juvenile diabetes.
TrialNet Chairman Jay Skyler, a professor and diabetes expert at the University of Miami, tells the Health Blog that the program has grown to about 200 sites and aims to expand testing sites further.
“We’ve been broadening our base and the aim is to convince all medical practices to participate,” he says. The goal is to screen at least two to three relatives of patients diagnosed with Type 1 “so we can really make progress” with research.
Distinct from the far more prevalent Type 2 diabetes, which is linked to obesity, Type 1 is an autoimmune disease that inhibits the body from producing the hormone insulin needed to convert food into energy. It requires lifelong insulin injections.
TrialNet uses a simple blood test to determine if patients have antibodies that indicate a risk for developing Type 1. Close blood relatives of people with Type 1 diabetes have 10-to-15-times-greater risk of developing the disease than others in the population. Nevertheless, about 80% of those with the disease have no family history.
JDRF, formerly called the Juvenile Diabetes Research Foundation, helps fund TrialNet and hosts mobile-screening units at its fundraising walks.
Richard Insel, JDRF’s chief scientific officer, says that new ways to score a patient’s risk can identify those with the highest chance of developing the disease within a couple of years, and can also be used to monitor the disease’s progression.
TrialNet provides family members who qualify for the screening testing kits on request and asks for a signed consent form. The kits can then be taken to a local doctor or lab.
In addition to grassroots efforts like mobile testing units, TrialNet teams also offer screenings at diabetes summer camps and has even sent a team to test one extended family. If a group asks for a screening, “we will get a team out there to do it,” Dr. Skyler says.
Among TrialNet studies underway is the Natural History Study, which is observing people at increased risk for Type 1 diabetes to learn more about the immune and metabolic events that precede actual symptoms.
Another is testing whether one insulin capsule a day can prevent or delay Type 1 diabetes in a specific group at risk, after an earlier clinical trial suggested that it might delay the disease for about four years in certain people.
Yet a third study is testing whether treatment with the drug teplizumab can prevent or delay the disease in high-risk relatives of people with type 1 diabetes. Earlier studies in people newly diagnosed suggest that the drug reduces the loss of insulin production during the first year of type 1 diabetes.
For Type 1 patients with a family history, participation in the study includes close monitoring and the potential to prevent or delay the onset of the disease, says Henry Rodriguez, a principal investigator at the University of South Florida. If diabetes can be delayed, even for a few years, those at risk may be able to postpone the difficult challenges of trying to control their disease and the development of potentially serious complications.
“We have the ability to identify those who are at that precipice before developing diabetes and start them on therapy before they get very ill,” Dr. Rodriguez says.