IMPORTANT NOTICE:  The NPDPSC requires that a genetic consent form be signed before the prion protein gene can be sequenced.  Please have the patient or next of kin sign a Genetic Consent form when submitting blood, frozen brain biopsy tissue, or frozen brain autopsy tissue.  Please notify us in writing that a consent form has been signed, or send us a copy of the signed consent form.  We cannot perform genetic testing without a signed consent form or written documentation of a signed consent form that specifically mentions genetic testing.

In order to provide effective surveillance for CJD and other prion diseases, we strongly recommend that an effort be made to have an autopsy performed in all suspected cases of prion disease. We are available to coordinate autopsies, and all of our services are provided free of charge. Please contact the Autopsy Coordinator at 216-368-0587 for more information.