Creutzfeldt-Jakob Disease (CJD) Reporting

Creutzfeldt-Jakob Disease (CJD) is reportable within one week. CJD is listed on the Texas Notifiable Conditions list as Prion disease such as Creutzfeldt-Jakob disease (CJD).

CDC’s Diagnostic Criteria and DSHS’s Case Criteria Guide (click on Prion diseases such as Creutzfeldt-Jakob disease (CJD) in the Table of Contents) are useful for clinicians and epidemiologists.

CJD became a notifiable condition in Texas in 1998. Suspected cases of CJD should be reported to local health departments by dialing 1-800-705-8868, or if you know your local health department jurisdiction, you may find contact information on the DSHS Texas Local Public Health Organizations website. 

Healthcare providers, hospitals, laboratories, schools, and others are required to report patients who are suspected of having a notifiable condition (25 Tex. Admin. Code §97.2). Several Texas laws (Tex. Health & Safety Code, Chapters 81, 84 and 87) require specific information regarding notifiable conditions be provided to the Texas Department of State Health Services (DSHS).

In 1997, the National Prion Disease Pathology Surveillance Center (NPDPSC or Prion Center) was established at the Division of Neuropathology of Case Western Reserve University to, among other functions, assist clinicians in the diagnosis of prion disease. The NPDPSC assists clinicians by analyzing cerebrospinal fluid, blood, brain tissue, and brain MRIs.

Information about diagnostic services, protocols for various CJD testing, and specimen submission can be obtained at NPDPSC's website or by contacting NPDPSC at Case Western Reserve University, 2085 Adelbert Rd. Rm 419, Cleveland, OH 44106; Phone: (216)368-0587; Fax: (216) 368-4090;  E-mail: cjdsurveillance@uhhospitals.org

Physicians are strongly encouraged to confirm the diagnosis of CJD by arranging for an autopsy following the death of the person suspected of having CJD. This is especially important if the person had an illness onset when less than 55 years old. Please contact NPDPSC for assistance with coordinating a free autopsy, or if needed,  submission of biopsy tissue, or autopsy protocols and autopsy shipping instructions.

Also, if there is not an alternative diagnosis, CDC strongly encourages listing prion disease on the death certificate.