Pennsylvania Department of Health announces new study on blood disorder Polycythemia vera

Residents with Polycythemia Vera in Bedford, Blair, Cambria and Somerset Counties Encouraged to Participate

The Pennsylvania Department of Health today announced a new, federally-funded study on the blood disorder Polycythemia vera, or PV, in Bedford, Blair, Cambria and Somerset counties.

Residents of these counties who were diagnosed with PV between 2001 and 2008 are eligible to participate in the study and will be compensated.

PV is a blood disorder that causes bone marrow to produce too many red blood cells, resulting in what is commonly referred to as "thick blood."  People with PV can sometimes be at increased risk for blood clots, heart attack or stroke. However, there are other disorders that also result in an excess of red blood cells. The other disorders are referred to as secondary polycythemia. It may be difficult to distinguish PV from the other disorders.  

The purpose of the new study is to evaluate the information the department receives from the Pennsylvania Cancer Registry on people who have been diagnosed with PV. Persons asked to take part in the study are those with PV reported to the state cancer registry as well as those identified by local physician offices.  

A 2008 study of PV in Carbon, Luzerne and Schuylkill counties in northeast Pennsylvania found a greater number of PV cases than would ordinarily be expected in the three-county area. However, the investigation also showed that some of the cases reported to the state cancer registry as PV were inaccurate, and some cases of PV had never been reported at all. This problem made it difficult to accurately determine the prevalence of PV in the area. It is important to know whether similar PV diagnosis problems exist in other parts of the state.

The four-county area in the southwestern part of the state was chosen because it shares many similar features with the tri-county area of northeast Pennsylvania; not because there appears to be an excess of PV. The similarities include population size, geography and environment.  

To help diagnose PV, patients who agree to participate will be interviewed about their health, medical history and environmental exposures. They will also have a blood sample collected to look for the presence of a genetic marker known as JAK2 in their blood cells. More than 90 percent of patients confirmed with PV have the JAK2 genetic marker in their blood cells. Results of the JAK2 test will be available to the patient and their doctor, but will otherwise be kept confidential.  

The Department of Health is working with the University of Pittsburgh Graduate School of Public Health to carry out the study. All PV patients in the four-county area who are listed in the state cancer registry and those identified through area physicians will be contacted by the University of Pittsburgh and asked to take part in the study. A nurse representative from the University of Pittsburgh will visit the participant's home to administer the survey and collect a blood sample. Knowing the JAK2 marker is present may help a doctor to more carefully monitor a patient's blood counts.

For more information on PV or the 2008 study of the northeast Pennsylvania tri-county area, visit http://www.atsdr.cdc.gov/sites/polycythemia_vera/index.html.