Testing Reporting

Our Internal Review Board requires that all results be reported to the caregivers or physicians sending the samples.  Patient families should obtain these reports from the caregivers and should inform the NPDPSC if they need assistance in obtaining them.

Final Autopsy Report

A final autopsy report will be issued upon completion of Western Blot, Histopathology and genetic testing (below) on the autopsy tissue sent to the center, and will contain the results of the tests alongside the final diagnosis on the case. The genetic results will be reported only if a signed Testing and Reporting form has been submitted to the center. Otherwise, a partial final report with only the Western Blot and Histopathology results will be sent out.

The turnaround time for the final report is approximately four to six (4-6) weeks from the receipt of the autopsy samples.

PrP Gene Sequencing in Blood and Other Tissues

A report will be issued stating whether a mutation was discovered in the gene which encodes the prion protein. The presence of a mutation indicates a diagnosis of CJD, FFI, or GSS as noted in the report.  Please note that, in cases where only blood is available, we cannot rule out the possibility of sCJD or iCJD as a potential diagnosis.

Turn-around time is approximately one (1) month from receipt of the samples. Please note that these results cannot be released without a signed Testing and Reporting form.

Cases from which more than one test could be performed, i.e.:

  • IHC test on fixed tissue and PrP gene sequencing on blood;
  • WB and PrP gene sequencing;
  • IHC, WB, and PrP gene sequencing