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Are we required to have an autopsy conducted in cases of suspected CJD?
Currently, we are not aware of any state that requires autopsy in cases of suspected CJD. However, several states require that the case be reported to the State Department of Health, and they strongly recommend that an autopsy be performed if CJD is suspected by a medical doctor. Your doctor should be able to tell you what is required in your state.
Why should we have an autopsy conducted?
- An autopsy is the only way to confirm the clinical diagnosis of CJD.
- It also is the only way to determine the type of CJD. Most CJD cases are sporadic. Other types of CJD are genetic, iatrogenic, or new variant. More information on the types of CJD can be found here. (insert link)
- It helps to further our understanding of CJD. Some day, we hope to be able to successfully treat this disease. In order to reach that goal, we must first understand how the disease works. Tissue acquired at autopsy by the Center is made available to laboratories qualified to do research on prions, helping to reach that goal.
What does the autopsy entail?
We perform brain only autopsies. This means that we will remove the entire brain for analysis. If for some reason you would like to have a full autopsy conducted, please let us know. We will try to make arrangements with the Institution where the autopsy is to be performed.
Will we still be able to have an open casket if we want one?
Only your funeral home can make that decision. However, many of the families who have an autopsy done have been able to have open casket funerals. Our autopsy coordinators are available to address any concerns that your funeral home might have.
How long will it take to have an autopsy performed?
The Center will make every effort to have the procedure completed within a day. However, please note that weekends and holidays can slow the process down. However, the autopsy can be performed with up to a few days delay without jeopardizing the diagnostic examinations.
Can the autopsy be performed locally?
Whenever possible, the Center brings a pathologist to the autopsy location in order to make the process as easy and quick as possible. However, the Center occasionally has to use an out-of-town provider. The Center will make all of the transportation arrangements and cover costs if they are necessary, and works to complete the entire process as soon as possible. The Center will keep you posted if delays are expected so that you can adjust your plans accordingly.
How do we make arrangements for an autopsy if you decide that to have the autopsy done?
Some hospitals will provide autopsy services for their patients. If they do not, the Center will make all of the arrangements. If you would like the Center to make autopsy arrangements for your loved one, call our Autopsy Coordinators at 216-368-0587. All you will need to do is provide the Center with some basic information about your loved one and send written consent to perform the autopsy. The Center will take care of everything else.
How much will an autopsy cost?
If the Center arranges the autopsy for you, it will be provided free of charge, including transportation if necessary. Please note that we cannot cover funeral or embalming charges.
Will the Center send us the results?
Our Internal Review Board requires the Center to send the results to a medical doctor only. Often, the Center sends the results to the patient’s neurologist or family doctor. You will be asked which doctor you would like to receive the results, and you can change this list at any time. These doctors can discuss the results with you, answer any questions you might have, and consult with you on the next steps. Please note that the Center cannot release the information directly to family members.
How long will it take to get results?
The samples must be treated before they can be safely sent to our facility. On average, most samples arrive to us in about 14 business days from the autopsy date. The Center’s first test results will be available in about 14 business days from the date of receipt. These preliminary results will tell you if the findings are consistent with prion disease or not, but they will not provide a full or complete diagnosis. The final diagnosis is provided in 1½ to 2 months on average. On rare occasions, the process can take longer, since some cases are challenging. At any time, you can contact the Autopsy Coordinator to learn the status of your case.
What if my loved one turns out not to have CJD?
The Center is willing to send the tissue samples to another facility for analysis or refer you to one of the pathologists at our facility. The Center will do everything possible to support your family in your search for answers. Unfortunately, the family must cover these expenses (if any) for the diagnosis made at other institutions.
What if I have more questions?
If you have any additional questions or would like to discuss your situation with someone at our Center, please call our Autopsy Coordinators at 216-368-0587.
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