Thalassemia Clinical Trial
Official title:
Assessment of Pain in People With Thalassemia
Thalassemia is an inherited blood disorder that can result in mild to severe anemia. People with thalassemia often experience pain, but the exact sources and prevalence of pain remain unknown. This study will examine the prevalence and severity of pain in people with thalassemia who are treated with regular blood transfusions and people with thalassemia who are not treated with regular blood transfusions.
Thalassemia is an inherited blood disorder in which the body makes an abnormal form of
hemoglobin—the protein in red blood cells that carries oxygen. People with thalassemia often
experience fatigue, shortness of breath, and pain. Recent medical advances in treating
people with thalassemia who receive regular blood transfusions—a standard procedure that
refreshes the healthy red blood supply—have resulted in increased life spans for these
people. However, with the extended life spans have come additional issues, including pain.
There have been no previous research studies that have examined pain levels in people with
thalassemia, and as a result, the sources and prevalence of pain remain unknown. The purpose
of this study is to assess the prevalence and severity of pain, common pain sites, and the
impact of pain on functioning and well-being in people with thalassemia who receive regular
blood transfusions and people with thalassemia who do not receive regular blood
transfusions.
This study will enroll people with transfusion-dependant thalassemia and people with
non-transfusion-dependant thalassemia. At a baseline study visit, participants will complete
a demographic questionnaire and a pain assessment questionnaire. At Months 3, 6, and 9,
study researchers will telephone participants to go over the same pain assessment
questionnaire again.
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Observational Model: Cohort, Time Perspective: Prospective
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