The National Prion Disease Pathology Surveillance Center (www.cjdsurveillance.com)
Sponsored by the American Association of Neuropathologists (AANP)
Dear Family Members:
Coping with the realities of a possible CJD diagnosis is very difficult. As the director of the National Prion Disease Pathology Surveillance Center, I want to make you aware of our critical work and some options available to you through our Center.
The National Prion Disease Pathology Surveillance Center (NPDPSC) is the only surveillance center for prion diseases in the United States. We operate in collaboration with the Centers for Disease Control and Prevention and our mission has been endorsed by the US Congress. Our work includes:
- processing and evaluating spinal fluid for the 14-3-3 protein,
- evaluating biopsy tissue,
- coordinating free autopsy service for any suspected or confirmed CJD case, and
- conducting CJD research supported by the National Institute of Health in state-of-the-art laboratories.
An autopsy is important because:
- it is the only definitive way to positively confirm a CJD diagnosis,
- provides the only method to identify the specific type of CJD,
- for identification of atypical cases and potential sources of infection such as chronic wasting disease,
- furthers our understanding of CJD (Tissues are used only for our CJD research and are made available to other research centers.), and
- it will help provide answers needed for families to obtain closure.
If you would like to arrange for an autopsy, the NPDPSC will:
make all the necessary arrangements for a pathologist closest to your location and pay for any needed transportation,
coordinate all arrangements with the funeral home,
pay for all of the services related to the autopsy,
provide the results of the autopsy to the physician, so that that doctor can review those results with you, and
upon request, help facilitate arrangements for a final diagnosis if the autopsy shows your loved one did not have CJD.
Pre-arranging the autopsy can alleviate some of the stress family members experience at this time. If you would like to discuss or plan an autopsy, please call our autopsy coordination team at1-216-368-0587. If you have further questions, please call us.
Thank you for helping us to better understand CJD.
Sincerely,
Pierluigi Gambetti, M.D.
Professor and Director
National Prion Disease Pathology Surveillance Center
Case Western Reserve University
MAILING ADDRESS
Institute of Pathology
Division of Neuropathology
Case Western Reserve University
2085 Adelbert Road
Cleveland, Ohio 44106-4907
Telephone: 216-368-0587
Fax: 216-368-4090
E-Mail: cjdsurv@po.cwru.edu
