Friday, April 1, 2016

Best Post of January 2016: Assistance Needed for National Prion Surveillance!

The next in our "Best of the Month" series is a guest post by Mark Cohen, MD and Jeff Negrey

An important request from Dr. Mark Cohen and Jeff Negrey on behalf of the National Prion Disease Pathology Surveillance Center (NPDPSC):

The NPDPSC serves the United States as the national testing site and repository for tissue samples from suspected cases of prion disease (CJD and others). We accept any autopsy tissues for free-of-charge prion testing. With proper tissue procurement, we are able to diagnose with certainty whether or not prion disease is present; and if so, exactly which form and subtype of prion disease (sporadic vs. familial vs. variant) the patient has. Tissue samples are then stored indefinitely and shared with qualified researchers and institutions around the globe.

In order to provide accurate surveillance of prion diseases in the United States, the NPDPSC needs to test CNS tissue. Patients often pass away in non-hospital settings, and even for those who die in hospital, there is ever-increasing reluctance among medical institutions to perform post-mortem examination on patients if CJD is even considered a possibility. Therefore, the NPDPSC offers financial and logistical assistance to families with loved ones suffering from suspected prion disease to obtain a brain-only autopsy and subsequent testing for CJD free of charge to the surviving family (including transportation to-and-from a regional autopsy site if needed). These procedures are coordinated with the nearest approved regional site willing to perform these procedures.

Our national network is a group of public and private autopsy providers located across the country. Sometimes procedures are performed in hospital settings; other times they are performed in mortuary settings prior to final arrangements. We are always looking to add autopsy and mortuary professionals to our network. We encourage all hospitals and medical centers to send us tissue samples from possible prion disease cases as part of our mission to identify and contain potential outbreaks of prion disease. However, we also are willing to reimburse individuals or institutions who accept brain autopsy requests on our behalf. We arrange transport of the patient to a pre-designated autopsy site and provide free-of-charge shipping materials for sending tissue.

If you, or someone you know, would like to join our national network of autopsy providers, please contact Jeff Negrey for further information (phone 216-368-1290 or email

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