Leading doctors who treat vascular diseases, like peripheral artery disease and venous thromboembolism, are pushing for the creation of a national registry, which they say could improve treatments and even prevent deaths.

At the very least, they want to see more data collected and shared about patients with these conditions.

Currently, no unified system exists to track patients with these vascular diseases. That leads to unreliable and often outdated statistics on these illnesses, which can be tricky to track, said Mary Cushman, M.D., M.Sc., FAHA, a hematologist and professor of medicine at University of Vermont College of Medicine.

While vascular diseases are directly responsible for fewer deaths than heart attacks and strokes, they cause many symptoms and reduce quality of life, she said. They can also identify risk of other problems. For example, patients with peripheral artery disease often die from heart disease or stroke. Yet the peripheral artery disease might be a bigger problem for them during life due to complications like leg amputation.

Cushman pointed out that vascular problems also often become a complication for cancer patients, who have a 12 percent risk of developing venous thromboembolism within six months of starting chemotherapy. Awareness of this risk is very low. About 20-25 percent of cancer patients who get venous thromboembolism die shortly thereafter, she said.

Venous thromboembolism in cancer is often an event that occurs near the end of life and can contribute to mortality, but that’s hard to capture because the tracking statistics will attribute the cause of death to cancer, not thromboembolism, she said.

“These things are really hard to get at and there is no national surveillance program to help,” she said.

The lack of a registry or access to a reliable, updated data source was a top concern expressed by doctors, health care professionals and clinical researchers at a recent summit on common vascular diseases.

Having an understanding of both how many people have vascular diseases and whether more patients are developing them can help with treatment and prevention efforts by health care professionals and researchers, said Naomi Hamburg, M.D., M.S., FAHA, FACC, a cardiologist and associate professor of medicine at Boston University Medical Center.

“In the absence of knowing who has the disease, and where these people are, it’s hard to make improvements over time,” she said.

She pointed out that national registries on other illnesses, such as heart disease, have helped improve patient care and save lives.

“There are many large registries, both at the state and national levels, that let us see how well we’re doing in terms of giving patients the treatments or procedures we know will help them survive their heart attack and be less likely to get another one in the future,” she said. “But we’re just lagging behind for many vascular diseases in terms of the same types of registries.”

Part of the problem is a lack of widespread awareness about vascular diseases, and how prevalent they are, by both the general public and doctors. That contributes to a lack of urgency.

Many people fail to recognize symptoms of vascular disease, such as an unusual occurrence of shortness of breath or sudden leg pain. Often, symptoms are dismissed as something else, such as arthritis, asthma, bronchitis or a sign of aging.

“If you cannot breathe normally, that is not normal. This is, literally, not something to blow off,” said Cushman, who also directs the University of Vermont Medical Center’s Thrombosis and Hemostasis Program. “You would be shocked at the number of patients we see with pulmonary embolism who go on for days and sometimes weeks with abnormal breathing. They figure, ‘Maybe it’ll go away,’ and they wait until they’re really sick, and then come in with their lungs full of clots.”

Early recognition of venous thromboembolism saves lives. Treatment is given immediately and involves thinning the blood with anticoagulant medications that are given for varying time durations tailored to the patient. Recognition of peripheral artery disease can prevent worsening problems by use of exercise treatment and medications that block platelet function.

Having better statistics and even a registry could help health care advocates boost awareness of peripheral artery disease and venous thromboembolism.

“If you can say, ‘This many people have this disease, and this is the adverse impact the disease is having,’ then it helps people understand this is something that really needs to be on their radar,” Hamburg said.