Letter to Families from Dr. Pierluigi Gambetti

The National Prion Disease Pathology Surveillance Center (www.cjdsurveillance.com)
Supported by the Centers for Disease Control and Prevention (CDC)


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 (NPDPSC), I want to make you aware of our critical work and some options available to you through our Center.

The 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 14-3-3 and Tau proteins,
  • diagnostic studies of biopsy tissue,
  • coordinating free autopsy service for any suspected CJD case with the purpose of making a precise diagnosis of prion disease,
  • provide tissues and body fluids to 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,
  • it 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 not only for our CJD research but also are made available to other research centers),
  • it helps 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 close to your location to perform the autopsy,
  • coordinate all arrangements in regards to the autopsy with the funeral home,
  • pay for all of the services related to the autopsy,
  • provide the results of the autopsy to your loved ones physician, so they can review the results with you,
  • 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 and further our research.

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