Standardizing Remote Assessment of Prion Disease

Prion disease (also known as Creutzfeldt-Jakob disease) is a devastating, fatal illness that rapidly degrades the brains of those affected. Approximately 90% of people with the disease die within one year after diagnosis. Dr. Brian Appleby and his team at Case Western Reserve University hope to develop a new standardized way of collecting information on patients with prion disease to help improve diagnosis, research, and treatment of the disorder.

Brian Appleby Dementia-Alzheimer's LBD Other November 9, 2018 at 2:59 pm


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Project Description

What we Know:
Prion disease is fatal in 100% of people who are affected, and there is no treatment currently available. In the months leading up to death, those suffering from prion disease can lose their memory and cognitive ability, become depressed and weak, lose control of their movements, go blind, and face increased risk of infections such as pneumonia. The cause of sporadic prion disease is not known, and most cases occur spontaneously around the age of 60. Earlier detection and a better understanding of disease progression may allow researchers and doctors to help those with the disorder.

Improved Understanding to Help Find a Treatment:
The rarity of prion disease makes it incredibly difficult for researchers to study, slowing progress in finding an effective treatment or cure. Currently, research is based on reports from doctors who treated patients with prion disease. Unfortunately, this means that there is a wide range in what gets reported, and how reliable the information is. Dr. Appleby and his team will develop a standardized method to evaluate prion disease patients by videoconferencing with them. This will allow researchers to base their studies off a much larger and more consistent set of information. Dr. Appleby hopes his new method will help researchers find a treatment that can save lives and improve outcomes for these patients.

Our Plan to Help:
The American Brain Foundation, with your help, will give Dr. Appleby the resources he needs to develop this new method of engaging with prion patients through video conference technology to assess their disease status, symptoms, and more. If Dr. Appleby and his team are able to successfully develop this method, they will help researchers find new ways to diagnose and treat this devastating disease.

How You Can Help:
By donating to Dr. Appleby’s research, you are directly contributing to the potential treatment of a devastating brain disorder. Dr. Appleby hopes that by better understanding and standardizing information about this rare disease, we may be able to learn more about prion disease and to stop it from debilitating and killing those suffering from it as well.

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