e-HAIL Event

Specific Aims Review Session

Eva L. Feldman, MD, PhDJames W Albers Distinguished University Professor, Russell N. DeJong Professor of Neurology, and Professor of NeurosurgerMedical SchooStephen Goutman, MD, MSHarriet Hiller Research Professor and Associate Professor of NeurologyMedical School
WHERE:
Remote/Virtual
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Zoom information will be sent to e-HAIL members.

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease with a median sur-vival of only 2-4 years after diagnosis. The rationale for this proposal is that while there are currently no therapies that can stop or reverse ALS for the vast majority of patients, there are treatments available that can help extend life and improve the quality of life, such as non-invasive ventilation machines and feeding tubes. Unfor-tunately, these therapies are not often accepted or used to their full potential by persons living with ALS. Therefore, there is a critical need to improve utilization of these therapies. This gap in treatment use may be due to a lack of education about therapies and the need for ongoing treatment monitoring, both of which can be improved. Additionally, ALS symptoms can change in between clinical visits, and catching these changes in real-time could allow for better, timelier care. We believe a digital health platform will provide patients with additional support between ALS clinic visits, helping them follow their treatments more effectively and spot symptoms that need attention.

Organizer

J. Henrike Florusbosch