Understanding frequency, intensity of pain associated with sickle cell disease is focus of new VCU study

By Joe Kuttenkuler

RICHMOND, Va. – Researchers at Virginia Commonwealth University are seeking volunteers in Virginia with sickle cell disease to participate in a federally funded, three-year study of sickle cell’s unpredictable and sometimes incapacitating pain.

The researchers are hoping to enroll 350 patients for the study, which starts in March and is funded by a $1.4 million grant from the National Institutes of Health.

"We believe that once we learn why people experience different degrees of pain, we can design better treatments to alleviate the pain," said Wally Smith, M.D., chairman of VCU’s Division of Quality Health Care in the Department of Internal Medicine and a national sickle cell disease expert.

Pain is the most prominent feature of sickle cell disease. Often the pain becomes so severe that hospitalization is required. According to Smith, doctors do not fully understand why pain differs from person to person. "It could be biological, psychosocial or differences in pain tolerance."

Study participants will maintain a pain diary to record the number and intensity of painful episodes they experience during a six-month period. They also will record whether the pain was managed at home, or if hospitalization was required.

Sickle cell disease is a hereditary condition that affects the body’s red blood cells. Normal red blood cells are soft, donut-shaped structures that pass easily through veins and arteries. Sickle cell patients have hard, crescent-shaped red blood cells that have difficulty passing through vessels in the body. Pain results when the irregular shaped cells cause blockages, depriving tissues of oxygen.

Approximately 77,000 Americans suffer from sickle cell disease. The majority of patients are African-American, but the disease can affect people of Spanish, Portuguese, Italian and Greek decent. About 2.5 million Americans have sickle cell trait, which is the gene that causes the disease.

In addition to pain, sickle cell disease can cause anemia, jaundice, multiple infections and gallstones. Strokes and damage to the lungs and other organs can occur as the disease progresses. While there is no cure for the disease, the pain can be controlled with medication. Currently, hydroxyurea is the only drug available that can reduce the number of painful episodes and blood vessel blockages.

The Virginia cities of Richmond, Hampton and Norfolk will serve as data collection sites. Participants must be at least 16 years old and be able to communicate clearly.

For information about enrolling in the study, call 866-828-7472.