Participate in a Study

Teleneurology Assessment Program for Creutzfeldt-Jakob Disease

This research program is designed to help improve ascertainment of prion disease cases and improve national surveillance. Participants will have one of three options:

  1. Send medical records only
  2. Engage in the Teleneurology Assessment Program
  3. Have University Hospitals assume clinical care of the patient (includes in-person visits)

The Teleneurology Assessment Program comprises six parts:

  1. Video conference technology used to obtain history, administer rating scales, and conduct neurological examinations
  2. Record review
  3. Brain MRI review by an expert neuroradiologist
  4. Management discussions if requested with subjects’ primary provider
  5. Offer of an autopsy through the National Prion Disease Pathology Surveillance Center Autopsy Program
  6. Follow-up discussion of results via video conference technology for further questions by the subjects and/or primary clinical provider once the results have been disclosed to the patient

The multiple facets of the Teleneurology Assessment Program are designed to improve Creutzfeldt-Jakob disease surveillance and research focused on improving the practice of diagnosing human prion diseases. In no way will the Teleneurology Assessment Program assume clinical management of referred subjects unless option 3 is chosen. This would result in the practice of medicine, which is beyond the scope of this project. If requested, management advice may be discussed with the primary clinical provider.

Referrals for this program are currently being accepted through the Creutzfeldt-Jakob Disease Foundation. For more information please contact the CJD Foundation by emailing , by calling 800-659-1991 or visit www.cjdfoundation.org.

Additional Research Projects and Studies for Patients and Families

We are accepting people with symptomatic prion disease (e.g., Creutzfeldt-Jakob disease) or those who are not experiencing symptoms, but who carry a mutation for genetic prion disease (e.g., genetic CJD, Gerstmann-Straussler-Scheinker disease, and fatal familial insomnia).

If you would like to participate in the study, we may ask you some questions about your medical history and may want to review your medical chart and examine you.

Current studies entail the following:

  • Collection of blood and urine for a study being conducted in conjunction with colleagues at the FDA
  • Collection of skin samples, skin swabs, and other material
  • Nasal brushing study

If you are interested or would like to know more, please contact Dr. Brian Appleby at 216-464-6412.

Request an Appointment

Request an appointment with a specialist at UH Neurological Institute or call
216-844-2724

or use our Online Request Form

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