To help determine the best therapies for patients with H.I.V., seven medical centers around the country will create the first electronic network to pool information about such care through a federal grant being announced today.
“It’s the first formal way to track H.I.V./AIDS treatments and outcomes on a broad, comprehensive scale and in real time,” said Dr. Michael Saag, the principal investigator of the project, which is based at the University of Alabama at Birmingham. A chief aim of the network is to determine the effectiveness of therapies for the thousands of patients in everyday practice compared with a hundred or so selected for clinical trials.
Extrapolating findings from clinical trials to individual patients can be difficult. One reason is that there are restrictions on the kinds of other ailments that participants in the trials can have. A second is that such trials are usually conducted on a short-term basis — weeks or months. Doctors say that while short-term information is crucial for starting therapy, they need more data about the long-term benefits and dangers of such treatments.
“Just when we think we know that what we are doing is right, we get surprised” by the recognition of a new problem, Dr. Saag said in an interview.
For example, soon after the marketing of newer antiretroviral drugs in 1996, AIDS experts were surprised to learn that a complication of the treatments, known as lipodystrophy, caused a change in the body shape of many patients. In some, the back of the neck resemble a buffalo hump from disfiguring deposits of fat.
And as newer antiretroviral drugs have allowed H.I.V.-infected patients to live longer, many are developing high blood pressure, diabetes, heart disease and other chronic ailments that become increasingly common with advancing age...
That is me. I have diabetes, high blood cholesteral and triglycerides, and mild lipodystrophy (in the stomach area) -- it's weird to have a sex pack and a paunch at the same time. It's good to know they're going to be casting a wider net to catch these side effects in drugs at an earlier stage of development and testing.