Integrating a Business Methodology to Improving Care for ALS: Brooke Eby

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At MDA 2024, Brooke Eby shared her perspective as a patient with ALS and the ways to incorporate business approaches to improving clinical care and increasing enrollment for drug trials. [WATCH TIME: 5 minutes]

WATCH TIME: 5 minutes

"We open up a trial and it's under enrolled. It's always less than we're expecting. And we don't know where these patients are, how do we find them? In this community, how do we make it so people can opt in to say 'I want to join trials, I'm open to trials,' almost like on LinkedIn, how there's an 'open to work' option. It's like an 'open to trial' option."

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gherig disease, is a progressive and fatal neuromuscular disease with a majority of patients dying within 2 to 5 years of receiving a diagnosis. Familial ALS, a hereditary form of the disease, accounts for 5% to 10% of cases, whereas the remaining cases have no clearly defined etiology. In recent years, there has been a growing awareness of the disease, through social movements like the ALS Ice Bucket Challenge, and advocates in the community, like Brooke Eby.

Eby, a patient living with the disease, gave the Keynote Address at this year’s Muscular Dystrophy Association (MDA) Clinical and Scientific Conference, held March 3-6, in Orlando, Florida. In her speech, she discussed a methodology that she incorporated at her job at Salesforce to bridge business aspects to clinical care for patients with ALS. As someone with a business background, she wanted to see if these approaches would translate, and hopefully speed the science up to one day find a cure.

In an interview with NeurologyLive®, Eby broke down the methods discussed in her presentation, which included cure, care, and fanfare. She highlighted the challenges of getting patients with ALS into clinical trials to advance therapeutics, as well as the need for a patient-centric area for this community to convene. In addition, she discussed how outside help from organizations like Salesforce can help with the process of identifying patients and connecting them with the physicians and institutions they may need.

Click here for more coverage of MDA 2024.

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