monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community

Scientists aren’t always the best at sharing amongst themselves. But sharing data could mean accelerated research. By making your own data available to scientists you can help contribute to a more holistic record, and by default, stimulate the research process.

This is the theory monARC Bionetworks stands by.

To combat the issue of data sharing, they’ve created the “Smart Health Record” which digitalizes and consolidates patient’s data (including data from sensors and mobile research apps) into a comprehensible format. The record allows you to have easier access to your own charts. It also gives you the ability to contribute to disease-specific “Patient Powered Research Networks”. These networks are beneficial to all involved. Not only do they provide researchers greater feedback when creating trial designs and analyzing outcomes, they provide patients pre-screening for clinical trials. This pre-screening makes the process of joining a trial easier for you and offers researchers a larger, more diversified population of participants much faster than traditional methods.

The first “Patient Powered Research Network” created by monARC Bionetworks was for Idiopathic Pulmonary Fibrosis.

For just identifying patients, they found their system was 50x faster than traditional centers. This success showcased the potential of using digital means to unify the network between patients, physicians, and researchers.

It’s impossible to deny that our world now revolves around technology. Not using it to our advantage is dismissing an opportunity to connect with one another, strengthen collaboration, and ultimately, speed up research. As brilliant as a researcher may be, no one has all of the answers. We know that great investigation requires great teamwork. monARC Bionetworks strives to involve patients in this partnership as much as possible.

They know that you care about the research that’s going on, and have valuable, firsthand insight to offer. By helping to digitalize your health records, they hope to give you more control of your own involvement in the world of research.


Share this post

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu