An App to Help Advocates Groups Collect Patient Data

Komathi Stem

At the Global Genes Patient and Advocacy Summit, we talked with Komathi Stem, chief executive officer of monARC Bionetworks about their mobile apps that the company offers for free to advocacy groups to help them organize their patient data.

As Ms Stem explains in this video, the app can be customized for a specific condition and the advocacy group can then engage with their members and use the app to collect data as well as educate patient.  

Stem states, “Patients can also track their symptoms on that app and the data that comes in, can then be used to create a population level data set that will attract more pharma and device companies to start developing treatments for that group because now they see a group that has an unmet need and they see it as a group that could actually participate in their trials.”

Stem further noted, “I've been in pharma for over 25 years and I've been in decision committees where we're sitting there looking at 5 different drugs and we only have funds to do 2 of them. The 2 drugs that typically get picked are the ones that have a great market potential or they're feasible to actually study. So a rare disease drug may get shelved because we think there aren't enough patients that will participate in order to finish a trial in a couple years. What monarch is doing is helping patients get trial ready.”

For more coverage from the Global Genes Summit, click here.

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