- Four purple (EDTA) top tubes each containing 5ml of blood should be collected. The tubes should be stored and shipped at room temperature using protective bubble wrap or Styrofoam the day that the blood is collected.
- Please note that blood is non-diagnostic and should only be sent to the Surveillance Center when a familial case is suspected, or if it has been requested by the Center. A complete clinical history and/or family pedigree should accompany the specimen. Effective 8/1/2011, if blood is submitted for genetic sequencing on a patient without confirmed familial CJD history, the referring institution or patient will be charged. The basic cost of testing is $412.00. For additional questions please contact the NPDPSC at 216.368.0587.
IMPORTANT NOTICE: The NPDPSC requires that a Testing and Reporting form be signed before the prion protein gene sequencing results can be reported. Please submit a Testing and Reporting form with blood, frozen brain biopsy tissue, or frozen brain autopsy tissue.
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 one of our Autopsy Coordinators at 216.368.0587 for more information.