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National Prion Disease Pathology Surveillance Center

June 1, 1998
The American Association of Neuropathologists [AANP] has established a National Prion Disease Pathology Surveillance Center at Case Western Reserve University (CWRU) in Cleveland, Ohio. This effort is being collaborated with the AANP, CWRU and the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. The Director for this program will be Dr. P Gambetti, Professor and Director, Division of Neuropathology, CWRU, Cleveland, OH;  and co-directed by Dr. B. Ghetti, Indiana University Medical Center, Indianapolis, IN.

A major objective of this project is to monitor the presence or absence of new variant Creutzfeldt-Jakob disease (nvCJD) and other emerging human prion diseases in the United States through systematic review of pathologic data and brain tissues of suspected or proven cases of human prion diseases. Initially, the center will collect pathology reports of autopsy or biopsy-confirmed cases of sporadic, familial, and iatrogenic CJD, as well as of other prion diseases, such as Gerstmann-Straussler-Scheinker syndrome (GSS) and fatal familial insomnia (FFI). These cases will then be reported to the CDC to augment its national CJD surveillance, which is mainly based on analysis of multiple cause of death data derived from routinely submitted death certificates.

The surveillance center has issued letters to neuropathologists requesting participation in the program.  Requests for information pertaining to all cases diagnosed as CJD, GSS, or FFI from January 1, 1994 to June 1, 1998, including any cases examined directly or in consultation. Information submitted should include the date of death or biopsy, the month of onset of the disease, and the patient's date of birth or age at death. There is also a questionnaire provided for submissions.  For ongoing surveillance, the Center is requesting samples, if possible, at least five grams of fresh, unfixed tissue from the cerebral cortex and cerebellum.  Please contact the individuals listed below for further information and copies of the questionnaires.

Dr. Pierluigi Gambetti, M.D. at CWRU
Email: cjdsurv@cwru.edu
Email cjdsurveillance@cwru.edu
www.cjdsurveillance.com

Telephone: 216/368-0587
Fax:  216/268-2546

All correspondence and shipments should be addressed to:

Pierluigi Gambetti, M.D.
Division of Neuropathology, Room 419
Case Western Reserve University
2085 Adelbert Road
Cleveland, OH 44106

Federal Express Account numbers can be obtained from CWRU for shipments.

Results from testing of samples from individual patients will be mailed to the sender.  A copy of the immunostained slides will also be made available.  CDC will issue summary reports on the prevalence of CJD in the United States and other findings of this surveillance effort.   If reports of individual case materials are considered for publication, senders will be offered authorship.

Comments:
Members of CJD Voice are sure the incidence rate of CJD is far higher than that which is published.  It is my personal and most sincere hope if what we believe is true,  that this program excels beyond the purpose of solely detecting nvCJD and does indeed show cause and proof that the true incidence of CJD (ALL FORMS) is extremely higher than one per million.   AND, if this should prove true, that the CDC will mandate reporting of CJD in all states!!! Sincerely and waiting and watching with anticipation........ Liz.

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