Demanding a Recount: MPDs May Not Be as Rare as the Experts Think
If you or someone you know has a Philadelphia Chromosome Negative Myeloproliferative Disorder (Polycythemia Vera, Essential Thrombocythemia or Chronic Idiopathic Myelofibrosis), you’ve probably been told it’s a rare or “orphan” disease, with one or two cases per 100,000 people. That has been the common wisdom for decades – and it may be way off the mark.
Preliminary analysis of insurance data suggests a much higher prevalence than the current literature reports. This is of great significance to the MPD community, pharmaceutical companies and research agencies; we believe that establishing a more accurate view of MPD prevalence and incidence will have a profound impact on public policy and stimulate research into new treatments.
How Many of Us Are There?
The MPD Foundation is sponsoring an epidemiologic study of the Chronic Myeloproliferative Disorders. (Epidemiology is the study of the distribution and determinants of disease in a population.) The Leukemia and Lymphoma Society is co-funding the study.
Together we have awarded a one-year grant to Xiaomei Ma, Ph.D., Assistant Professor in the Department of Epidemiology and Public Health at Yale University School of Medicine.
The specific aims of Dr. Ma’s study are to:
- Assess the utility of insurance codes as a means for estimating the number of people diagnosed with MPDs. Medical records of patients who were enrolled in a Connecticut health plan and had one of the MPD-related ICD-9 codes recorded will be reviewed to estimate the percentage of patients who actually have MPDs based on established diagnostic criteria.
- Obtain administrative data from up to five insurance payers in Connecticut and Medicare to assess the prevalence of MPDs in Connecticut, using the percentage obtained in Step 1.
- Use nationwide Medicare data to evaluate the incidence and prevalence of MPDs in the US population 65 years or older.
- Use nationwide Medicare data to describe co-morbidities of MPDs in the US population 65 years or older.
The study will also analyze the data for potential gender and age differences in the prevalence and incidence of MPD.
Xiaomei Ma, Ph.D.
Assistant Professor, Department of Epidemiology and Public Health
Yale University School of Medicine
Dr. Ma’s primary research interest is in the epidemiology of chronic non-infectious diseases, particularly malignancies of the human hematopoietic system. Her current research includes (1) selected environmental and genetic factors in the etiology of childhood leukemia; (2) classification and quality of life issues in patients with myelodysplastic syndromes; and (3) methodological issues in the design of various types of epidemiologic studies, with an emphasis on case-control studies.