Carbon, Luzerne, and Schuylkill Agency for Toxic Substances and Disease Registry (ATSDR)
Updates about the Agency for Toxic Substances and Disease Registry (ATSDR)/Centers for Disease Control and Prevention (CDC) 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. If you are not interested in these updates from me, please just let me know and I will remove you from our contact list. Thank you!
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.
Status
As of October 1, 2013, all but one of the contracts for the 18 projects have ended. The one exception is the tissue bank, which will remain open through May 2014.
In meetings with community members this summer, ATSDR was asked to share a summary of the status of final products anticipated from the 18 projects of the overall PV investigation in northeast Pennsylvania. The graphic with this email provides this summary as of October 2013. I’ve attached this graphic as a PV Research Projects Status Graphic October 2013 (pdf). 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.
As of October 30, 2013, work is complete and a final product is available (if applicable) for 5 projects. Final products for another 9 projects are in progress. Final products for 4 projects are anticipated but not yet started.
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.
Please let me know if you have any questions or would like to discuss this information further, or you have suggestions on how I might improve this update in the future. I know this is a detailed graphic, if you would like me to mail you a hard copy of a larger version I would be happy to do that, just let me know your mailing address.