Barriers to autopsy: Creutzfeldt-Jakob disease in New York state

Surveillance of Creutzfeldt-Jakob disease (CJD) monitors trends and ensures timely identification of variant CJD and other emergent prion diseases. Brain tissue is needed to definitively diagnose these diseases. A survey of neurologists and pathologists in New York State was conducted to understand neurologists' and pathologists' views on autopsy and CJD. Neurologists reported using autopsy rarely or never. Over half of the pathologists worked in facilities that did not perform autopsies when CJD was suspected. Barriers to autopsy included family reluctance, infection control concerns, and local facilities unable to perform brain autopsy. More accurate, complete recognition of CJD and variant forms depends on physician awareness of the manifestations of CJD and its diagnosis, access to pathologists and facilities willing and able to perform brain biopsies and autopsies, and family acceptance of such procedures.