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.
Background
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.
Status
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:
http://www.atsdr.cdc.gov/sites/polycythemia_vera/
http://www.atsdr.cdc.gov/sites/polycythemia_vera/
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 7 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:
Visit ATSDR’s web page on PV: http://www.atsdr.cdc.gov/sites/polycythemia_vera/index.html
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 lkw9@cdc.gov. "
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.
3Booklet on drinking water quality sales support Groundwater Education Outreach in PA and Green Products for Home and Office (Conservation First).
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