NPDPSC Autopsy Coordination Program

Currently, we are not aware of any state that requires an 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.

Brain tissue examination is the only way to definitely confirm the clinical diagnosis, etiology, and subtype of prion disease. An autopsy helps to further our understanding of prion disease, add to its detection and hopefully will lead to a successful treatment of this disease. In order to reach that goal, we must first understand how the disease works. Tissue acquired by the Center is made available to qualified laboratories worldwide to do research on prion disease, helping to reach this goal.

The NPDPSC encourages all medical centers, hospitals, universities, etc. in the United States to send tissue samples to the NPDPSC for testing in order to confirm the presence of the disease and determine disease type. These samples are usually obtained during an autopsy procedure. The NPDPSC realizes that often times there are logistical, financial, and informational barriers that prevent brain autopsies from being performed. If needed, the NPDPSC can offer financial and logistical autopsy assistance to families with loved ones suffering from suspected CJD and other prion diseases. Brain autopsies are coordinated to the nearest approved regional site willing to perform these types of autopsies. Brain only autopsies require the removal of the entire brain for analysis.

Some hospitals will provide autopsy services for their patients and know to send the appropriate tissue samples to NPDPSC for testing. However, the NPDPSC realizes that oftentimes there are logistical, financial, and informational barriers that prevent brain autopsies from being performed. If needed, the NPDPSC can offer financial and logistical autopsy assistance to families with loved ones suffering from suspected prion disease.

If you would like NPDPSC autopsy assistance for your loved one, please call the Center (216-368-0587) and ask to speak with one of our Autopsy Coordinators . The NPDPSC will need to collect some basic information about your loved one and confirm there is clinical suspicion for CJD or other prion diseases before we can agree to offer autopsy assistance.

There is an Autopsy Consent Form that will need to be filled-out and signed by the Legal Next Of Kin (as determined by your local jurisdiction) before autopsy arrangements can be made.

The NPDPSC coordinates autopsies to the nearest regional approved site that is willing to perform such autopsies. The NPDPSC utilizes a national network of approved medical institutions and private autopsy providers to perform brain-only autopsies. Most states have at least one regional autopsy site, although determining the exact location for a procedure depends on staff availability at the time of the patient’s passing.

If the patient is located in an area that does not have a regional autopsy provider within a reasonable distance, the NPDPSC can bring an autopsy professional directly to the patient for brain recovery. However, this requires the permission from an autopsy site (usually a funeral home) and takes 2-7 days for scheduling. The NPDPSC will work closely with the family’s funeral home of choice to make autopsy arrangements.

If transportation for autopsy is needed, the NPDPSC can make transportation arrangements and cover costs if necessary. The Center will keep you posted if delays are expected, so that you can adjust your plans accordingly.

The NPDPSC makes every effort to have the procedure completed within 1-3 days of passing. However, weekends and holidays can extend this time frame by 1-2 days. Nonetheless, the autopsy can be performed a few days following death without jeopardizing the quality of the tissue for diagnostic examinations. In most cases, autopsy will not delay funeral arrangements.

If the patient is accepted for autopsy assistance, all autopsy related costs are covered by the NPDPSC. These costs included the autopsy itself, any transportation or use-of-facility fees associated with the autopsy, and the testing for prion diseases (CJD).

However, the NPDPSC is only funded to test for prion diseases (CJD). If negative, the NPDPSC can send any remaining tissue to a physician or medical center for further neuropathological workup. The NPDPSC can offer a further neuropathological consultation at a cost of $500. There are additional paperwork and payment that will need to be filled out and submitted after prion disease testing is complete. Please note that the Center cannot cover funeral or embalming charges.

There is no scientific or medical reasoning not to allow embalming preparation and a full viewing ceremony. However, individual funeral homes ultimately make that decision. Our autopsy coordinators are available to address any concerns that your funeral home might have.

The NPDPSC is only permitted to release our results to physicians. If tissue samples are submitted without NPDPSC autopsy assistance, all results will be reported to the submitting physician. If tissue samples are acquired through NPDPSC autopsy assistance, all results will be reported to the physicians listed on the NPDPSC Brain-Only Autopsy Consent. These doctors should discuss the results with you, answer any questions you might have, and consult with you on the next steps. The Center CANNOT release results information directly to family members.

Generally, results take about 6-8 weeks from the time of autopsy. Because of tissue preparation at the site of autopsy, most samples arrive at the NPDPSC in an average of 3 weeks from the autopsy date. The NPDPSC performs up to 3 different tests on tissue(s) submitted to the Center. The result of the Western Blot test is the first result available and will tell you if the findings are consistent with prion disease or not, but they will not provide a full or complete diagnosis.

The second report are the immunohistochemistry results, and the final report includes the final diagnosis and type of prion disease and includes results of genetic testing. 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.

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.

Additional information can be found on the CJD Foundation website, as well as on the links listed on the Resources for Families section.