Results from The MDS Foundation’s 2004–2005 Practices & Treatment Survey, distributed to 102 Centers of Excellence (48 US and 53 international academic medical centers), indicate that the perceived incidence of MDS patients is increasing. 70% of the 70 responding centers that reported higher case loads in the last five years attributed the increase to rising participation in and interest in clinical trials (37%), improved diagnostics and treatments (27%), and increased awareness and referrals (16%). Although 83% of the respondents indicated that their institution uses the World Health Organization (WHO) classification system, only 28% of referred patients were categorized by WHO subtype. Analyses of treatment strategies revealed that an average of 41% of patients in Low and Intermediate-1 International Prognostic Scoring System (IPSS) risk groups received supportive care only (median, 50%), 34% received active treatment (median, 30%), and 25% are being followed expectantly (median, 25%). For IPSS Intermediate-2 and High risk groups, an average of 30% of patients received supportive care (median, 30%), whereas 63% received active treatment (median, 70%), and 7% are being observed (median, 10%). Survey responses showed a wide array of interventions including transfusions (94%, with 28% indicating transfusion as the only type of supportive care used), erythropoietin alone or with myeloid growth factors, G- or GM-CSF alone, cyclosporine, antibiotics, vitamins (B12, B6, folic acid), or corticosteroids. Median ranking of the current investigative agents for the treatment of MDS indicate that lenalidomide, decitabine, and oral iron chelation therapy are viewed as the most clinically useful agents for all IPSS risk groups; amifostine and calcitriol were viewed as being least useful; arsenic trioxide and thalidomide were viewed as somewhat useful. These survey responses from investigators associated with academic medical centers with clinical research or diagnostic programs in MDS suggest that more disparate MDS treatment approaches may be expected in the office-based setting. The epidemiologic and treatment survey responses indicate that there is an urgent need for establishing guidelines that would assist clinicians in effectively matching patient and disease characteristics with treatment options, particularly as a number of therapies are moving forward in clinical testing phases.

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