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For Health Care Providers | For Local Health Departments | Background | How is CJD Diagnosed? | Resources

HOW IS CJD DIAGNOSED?

A definitive diagnosis can only be made by examination of brain tissue (biopsy or autopsy). This is the only current method of confirming the diagnosis of both sporadic CJD and variant CJD.

Diagnostic tests that are not confirmatory but are used in conjunction with clinical symptoms to help make a diagnosis of what is termed “possible” or “probable” CJD include:

Magnetic resonance imaging (MRI) - is the most useful diagnostic test for CJD. The recommended imaging is T2 and proton density axial images with 3 mm slice thickness, FLAIR axial and sagittal images at 3 mm slice thickness, T1 images, and diffusion-weighted images (DWI).
MRIs can have findings of likely CJD and are useful in ruling out other neurological diseases. vCJD and sCJD have different finds on MRI.

Electroencephalogram (EEG) – Distinctive abnormalities may be seen in patients with CJD but are not definitive. As the disease progresses, EEG findings also change. In the early stages of sCJD, the EEG may be normal or may show non-specific slowing. With progression, biphasic or triphasic periodic complexes that evolve into periodic sharp wave complexes appear. In vCJD cases, EEG findings are usually absent or they may be defined as nonspecific, slow wave abnormalities.

Cerebral Spinal Fluid (CSF):

Protein 14-3-3 - CSF contains a protein called 14-3-3 and elevated levels may be seen in patients with CJD. The 14-3-3 immunoassay is not a screening test but may be helpful in clinically diagnosing patients exhibiting rapidly progressive dementia and is used when a diagnosis of CJD is suspected.

Test results for examination of the 14-3-3 protein in the CSF are reported as elevated, not elevated, or ambiguous. An elevated level of 14-3-3 protein in the CSF may be positive in a number of neurological diseases, including CJD, and hence it is not considered a confirmatory test for CJD. Other conditions such as a recent stroke, neoplasm, or encephalitis can cause elevated levels of the 14-3-3 protein. Blood in the CSF sample can also cause the 14-3-3 protein to be elevated. A negative CSF cannot exclude the diagnosis of CJD while a positive test could reflect another disease.

A few specialty laboratories test for the presence of the 14-3-3 protein. The National Prion Disease Pathology Surveillance Center (NPDPSC) at Case Western Reserve University is the preferred laboratory to send CSF for 14-3-3 testing.

Tau protein - is another CSF protein that may be elevated in CJD. The NPDPSC has begun testing all CSF sent for 14-3-3 protein for tau protein as well. Tau protein appears to be a more sensitive test than 14-3-3. A positive test for tau protein, however, is also NOT a definitive diagnostic test for CJD, and must be interpreted in the context of clinical disease and pathological examination of brain tissue. Elevations in tau protein, for example, may also be found in the much more common dementing illness, Alzheimer’s disease.

Other - A variety of other CSF diagnostic tests have been reported in small series, including the S100 protein, and neuron specific enolase. These are of unproven diagnostic utility at present, but may become more used as they are studied further.

POSTMORTEM TESTING - confirmatory diagnosis of CJD requires pathologic examination of brain tissue.

Brain biopsy may detect CJD but should not be used to rule it out. False negatives can occur because samples collected may not include the brain tissue where the abnormal prions are present.

Autopsy, which involves the entire brain, is definitive and is the most reliable means of confirming a diagnosis of CJD and ruling in or out a diagnosis of vCJD or some other possibly new form of transmissible spongiform encephalopathy (TSE).

In the United States, the NPDPSC provides free autopsy and laboratory services. This national reference center (established by the CDC in collaboration with the American Association of Neuropathologists) provides state-of-the-art prion disease diagnostic testing.

The CA Department of Public Health encourages providers to obtain autopsies in all clinically diagnosed or suspected CJD cases regardless of age, in order to confirm the precise type of CJD. Our continued efforts to conduct surveillance for CJD and variant CJD will be greatly enhanced by increasing the proportion of CJD cases that are confirmed through autopsy and tissue examination

Arrangements for autopsy and laboratory testing can be made through the National Prion Disease Pathology Surveillance Center. For details regarding the collection and shipment of clinical specimens, as well as additional resources available at the National Prion Center, can be obtained from its website (http://www.cjdsurveillance.com) or call (216) 368-0587.


DIAGNOSTIC TESTING - Provided by The National Prion Disease Pathology Surveillance Center (NPDPSC)

1) CSF examination for elevated levels of the 14-3-3 protein
2) DNA analysis on blood or brain tissue for the presence of a genetic mutation. This test can only determine if a case has a familial prion disease. For other prion disease the genetic analysis may help to identify the specific type of prion disease.
3) Western Blot to determine the presence of the abnormal protease resistant prion protein (PrPsc). If the abnormal protein is present, the case is positive.
4) Histology and Immunohistochemistry – tissue is examined under a microscope to look for distinct histological abnormalities. Immunohistochemical staining is done to characterize the findings and to help determine the type of prion disease



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