Individuals with CJD or who tested positive for a CJD mutation should not donate any organs. CJD has been transmitted from corneal and dura mater grafts and there is a possibility that other organs could also transmit the disease. In the event an individual dies from CJD, the brain can be donated for research purposes.
Performing an autopsy is the only definitive way of diagnosing CJD at this time. As with all end of life issues, this is a very personal decision. Due to the fear surrounding the infectivity of CJD, some coroners will not perform autopsies on individuals suspected or diagnosed with CJD. If you have difficulty getting someone to perform an autopsy and your wish is to have an autopsy done, there are options available to you. The National Prion Disease Pathology Surveillance Center will perform autopsies free of charge and will even arrange for transportation as needed.
To obtain information regarding organ donation for research purposes and autopsy services contact:
National Prion Disease Pathology Surveillance Center
Institute of Pathology
Room 419, Case Western Reserve University
2085 Adelbert Road
Cleveland, OH 44106
Telephone: (216) 368-4090
Fax: (216) 368-4090
Due to the fear surrounding infectivity of CJD, some funeral home directors refuse to embalm individuals suspected or diagnosed with CJD. The CJD Foundation can assist families by educating Funeral Home Directors. They can also assist in finding Funeral Homes in your state that have experience with CJD and who are willing to embalm and hold services for CJD patents and families. Contact the CJD Foundation for further information and assistance at:
The CJD Foundation
341 W. 38th Street, Suite 501
New York, NY 10018