The Cutaneous Lymphoma Foundation has funded an important epidemiology study that shows that the number of new cases of CTCL has doubled. In this study, published in the July 2007 issue of the Archives of Dermatology, Drs. Vincent Criscione and Martin Weinstock of Brown University report that there are approximately 1,600 new cases of CTCL diagnosed each year in the United States. This represents over double the number of new cases in the past fifteen years.

In their study, Criscione and Weinstock describe incidence trends (or the rate at which this disease occurs) for CTCL in the United States from 1973 to 2002. They determined that the overall annual incidence of CTCL was 6.4 per million, a total of 0.14 percent of all cancers, and 3.9 percent of non-Hodgkins lymphomas. This represents a more than doubling of the incidence since the last study that was conducted in 1992. Cases of CTCL was higher among blacks and men. Racial differences decreased with age and have not changed over time. Gender differences in incidence increase with age and have decreased over time. Geographic variation in incidence was found and correlated with high physician density, high family income, high percentage of the population with a bachelor’s degree, and high home values.

The exact cause for the observed increase in CTCL incidence is unknown and cannot be determined from this epidemiology study. However, the findings do provide an important framework for investigators to design new clinical and experimental studies. It also draws much needed attention to CTCL and may contribute to greater resources for research.

The study did not address other important epidemiologic factors of CTCL such as death rate, prevalence (number of patients with CTCL) and factors influencing survival. Case-control studies of the 1990s have demonstrated that a complete response in patients diagnosed with Stage IA CTCL (less than 10% body surface area involvement) correlates with a lack of disease progression and a normal life span. Recent combinations of biologic therapies appear to have prolonged survival in advanced stages of CTCL. Future studies are needed to determine death rate, prevalence and the impact of treatment on CTCL survival.

Because this study was funded by the Cutaneous Lymphoma Foundation, it represents tangible evidence of the Foundation’s capacity to partner with physicians and scientists to advance the agenda of CTCL. The Cutaneous Lymphoma Foundation looks forward to continuing its relationship with investigators and funding meritorious research in the future.

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