related_education

Prion Resource Sharing

The Memory and Aging Center encourages and facilitates research and publications by current and new investigators. We are eager to help generate successful proposals, secure funding and publish study results. Resources are provided solely for use in academic, not-for-profit research at recognized educational institutions.

Academic, not-for-profit investigators can request the following resources from the UCSF Memory and Aging Center (MAC):

  • Subjects for research studies
  • Archived data
  • Imaging data
  • Tissue specimens
  • Video clips of behaviors

For details, please see our Resource Sharing page.

Prion Research Meetings

Scientific and medical meetings provide a forum for new ideas in research or treatment to be presented to colleagues and discussed. There are several meetings focused on prion disease.

Lorne Conference on Protein Structure and Function

  • February 9–13, 2014
  • Lorne, Victoria, Australia

Recent Publications About Prion Disease

To read scientific abstracts and articles, please search PubMed, a service of the National Library of Medicine and the National Institutes of Health or browse our selected list of articles about prion disease.

PubMed is a service of the National Library of Medicine and the National Institutes of Health. It comprises more than 22 million citations for biomedical literature from MEDLINE, life science journals and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.

Selected Articles Related to Prion Disease

Laboratory Prion Research

The Memory and Aging Center clinical team collaborates closely with several research laboratories at UCSF to quickly convert laboratory discoveries about human prion disease into novel treatments.

The Prusiner Laboratory

Dr. Stanley B. Prusiner discovered prions, for which he won the Nobel Prize in 1997, and is currently Director of the Institute for Neurodegenerative Diseases and Professor of Neurology and Biochemistry at the University of California, San Francisco. He is the editor of 12 books and over 350 research articles.

Clinical Prion Research

Currently the UCSF Memory and Aging Center is running two clinical research studies that enroll people with Creutzfeldt-Jakob disease. One aims to improve the understanding, diagnosis and treatment of rapidly progressive dementias – including CJD, while the other looks more broadly at several clinical syndromes that can lead to dementia.

Early Diagnosis of Human Prion Disease

Caring for Your CJD Patients

When patients and families hear about prion disease, they are often scared, sad and angry. You will need to treat these emotional needs and reactions, as well as the neurological ones. Cultural differences may also affect attitudes and decision-making about health care, medications, surgery, experimental or alternative treatments or autopsy.

When patients and families hear about prion disease, they are often scared, sad and angry. You will need to treat these emotional needs and reactions, as well as the neurological ones. Cultural differences may also affect attitudes and decision-making about health care, medications, surgery, experimental or alternative treatments or autopsy.

Some simple steps to improve communication:

  • Avoid highly technical language or jargon
  • Show appropriate concern for problems expressed by the patient or family
  • Pause to listen to the patient and family

Sending Samples

Genetic and paraneoplastic testing are available in the US.

Genetic testing for familial prion disease in the US is only available through the National Prion Disease Pathology Surveillance Center (NPDPSC). Individuals who wish to be tested need to undergo genetic counseling and have their physician send in the test sample.

Paraneoplastic testing can be done through the following laboratories:

Syndicate content