Rare Disease Report

An App to Improve Patient Participation in Clinical Trials

SEPTEMBER 20, 2017
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 make it easier for patients to participate in clinical trials.

Ms. Stem wants to accelerate clinical trials by making it simple for patients to directly share data with researchers as well as make it easier for patients to participate in trials, preferably by allowing them to participate remotely for part of the trial.

Using their smart health record technology, monARC consolidate all of a patient’s medical records, electronic or paper, and then using a disease specific mobile app, the patient can track their symptoms in between clinic visits. All of that data can then be put together and shared with their caregivers, family, and clinicians. 

At a population level, the data can also be shared with pharmaceutical and device companies to determine which endpoints are relevant to a clinical trial.

Disease specific apps and sensors provides patients with more freedom to participate in clinical trials remotely and thereby allow clinical researchers to reach a more diverse patient population that better represents the disease being studied.

As Ms. Stem points out, only 5% of qualified patients actually participate in trials despite the fact that 85% would like to participate in one. Hopefully, providing technology that allows patients more flexibility will improve those statistics.  

For more interviews from the Global Genes Summit and other conferences, follow Rare Disease Report on Facebook and Twitter.

Stay informed on the latest rare disease news and developments by signing up for our newsletter.
Copyright © RareDR 2013-2019 Rare Disease Communications. All Rights Reserved.