Director of the NPDPSC
The National Prion Disease Pathology Surveillance Center (www.cjdsurveillance.com)
Sponsored by the American Association of Neuropathologists (AANP)
Dear Clinician:
The National Prion Disease Pathology Surveillance Center (NPDPSC) monitors the occurrence of prion disease through characterization of brain tissue pathology from clinically diagnosed cases of Creutzfeldt-Jakob disease (CJD). As the director of the NPDPSC, I wanted to make you aware of the following, which may be helpful in your work with current and future cases of suspected CJD:
- The 14-3-3 test performed on cerebrospinal fluid does not definitively diagnose CJD and other prion diseases.
- A firm diagnosis of CJD can only be achieved through brain-only autopsy.
- Autopsy provides the only method to fully classify the type of CJD (sporadic, familial, iatrogenic, or variant). Autopsy also allows for the identification of atypical cases and potential sources of infection such as chronic wasting disease.
- Autopsies help to further our understanding of CJD. Tissues acquired at autopsy by the Center are made available to laboratories to do prion research.
- Ideally, autopsies should be performed within 24 hours post mortem. However, NPDPSC has successfully diagnosed cases autopsied up to six days post mortem.
- NPDPSC offers a free autopsy coordination service. We make all of the arrangements, including locating the pathologist, arranging for transportation if necessary, and coordinating with the funeral home. NPDPSC will cover all costs associated with the autopsy.
- Pre-arranging the autopsy with NPDPSC can alleviate some of the stress on the family and can result in a more rapid and efficient autopsy process. NPDPSC staff are available to make autopsy arrangements at any time after the diagnosis of suspected CJD has been made.
- Our autopsy network includes major health centers throughout the United States. In most cases, an autopsy can be arranged and completed within 24 hours, including any necessary transportation. In the event of any delays (usually caused by weekend or holiday hours), the family will always be informed of the status.
- Embalming and viewing are still possible after a cranial autopsy is performed. NPDPSC staff members are available to consult with funeral homes to insure that families can still have their desired memorial services.
- All results are sent to the clinicians designated by the family to facilitate answering their questions and discussing any appropriate next steps.
- If the autopsy shows that the patient does not have CJD, NPDPSC can help facilitate arrangements to arrive at a final diagnosis.
To make autopsy arrangements, or for more information about the autopsy program, please contact our autopsy coordination team at 1-216-368-0587.
Thank you for helping us to further our understanding of this significant health concern.
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
