Thursday, January 15, 2015

Northeast Pennsylvania Polycythemia Vera (PV) Investigation

Agency for Toxic Substances and Disease Registry (ATSDR)/Centers for Disease Control and Prevention (CDC) Northeast Pennsylvania Polycythemia Vera (PV) Investigation.  Update for 2014 !

Author - Lora Siegmann Werner, ATSDR Region 3

Posted with the authors approval - "I included you on this email because you have indicated in the past you were interested in receiving updates about ATSDR/CDC’s work to study the occurrence of polycythemia vera (PV) in three northeastern Pennsylvania counties (Carbon, Luzerne, and Schuylkill), or you are one of the researchers involved in this work.  When updates are available, my goal is to share this kind of email update with you periodically.  I first sent an update like this in October 2013, and most recently sent out updates in August 2014 and October 2014. This update is for January 2015.  

In 2004, using state cancer registry records, the Pennsylvania Department of Health (PADOH) found a PV cluster in northeast Pennsylvania. PV is part of a disease group called myeloproliferative neoplasms (MPN), which is a group of slow-growing blood cancers where the bone marrow makes too many red blood cells, white blood cells, or platelets. 

In 2006, ATSDR was asked to help study PV patterns in the area. From 2007-2008, ATSDR reviewed medical records, conducted genetic testing, and confirmed this PV cluster.  In 2009, Congress funded ATSDR to continue this investigation. ATSDR is overseeing 18 projects with PADOH, the Pennsylvania Department of Environmental Protection, and various universities and private organizations. These projects are based on recommendations from an expert panel. The panel identified four areas for investigation; epidemiology, genetics, toxicology, and environmental studies.
In 2014, the last of the contracts for the 18 different projects ended.  

The graphic with this email provides a summary of the status of each of the 18 projects as of January 2015.  I’ve attached this graphic both as a “snapshot” in the body of this email, as well as a pdf attachment.  Projects highlighted in “green” in the attached graphic have work complete and a final product available (if applicable).  Projects highlighted in “yellow” have final products in progress and undergoing clearance.  Projects highlighted in “red” have final products that are anticipated but not yet started.  The shapes of the projects in the graphics give you an idea of the category of work of that project, as described in the key on the graphic.

As of January 6, 2015, work is complete and a final product is available (if applicable) for 11 projects.  We are happy to announce that 1 new project (#10) moved from yellow to green since my October 2014 update:
#10:  “A Feasibility Assessment to Improve the Reporting of Hematopoietic Diseases“ conducted by CDC’s Division of Cancer Prevention and Control.  Final report and ATSDR/CDC summary factsheet on ATSDR website at:

The purpose of this study was to find ways to increase reporting of PV and other blood cancers to cancer registries by physicians’ offices and other outpatient facilities by working with state central cancer registries in Kansas, New York, and South Carolina. Blood cancers are under-reported because they are often diagnosed and treated in outpatient facilities. The reporting practices of physicians’ offices and other outpatient facilities can affect the completeness and accuracy of cancer registry data.  The primary finding from this study was that a substantial amount of effort and staff resources on the part of state cancer registries is needed to enhance the reporting for these illnesses. Final products for another projects are in progress; this includes one new project moving from red to yellow (#6, Gene Profiling) since my October 2014 update.   We are happy to report that all projects are in at least the yellow stage of final product development at this time.

For more information:
Call ATSDR’s toll-free PV information line: 866-448-0242 or email jcx0@cdc, which will connect you to Dr. Elizabeth Irvin-Barnwell, ATSDR Division of Toxicology and Human Health Sciences. 

Contact Lora Siegmann Werner, ATSDR Region 3, by phone at 215-814-3141 or by email at "

Comments by Brian Oram - Keystone Clean Water Team
1. Interesting pdf documents

2.Radionuclides may play a role -Recommend radon and radionuclide  testing if you are in regions with high background. 

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