What No One Will Tell You About Clinical Research

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Precision Medicine initiatives start with a sample, be it blood or tissue, some type of specimen to give scientists the genomic data they need to work from. Traditional clinical research starts with specimens that need to be sequenced, then work is done in model systems (cell or animal), before finally being published in journals.

Right now, being published in a medical journals is a competition. The first to discover and publish are almost always the ones to get funded. So the scientists with the most data tend to be the ones with the most funding. The reason adult studies get funded so much more often that pediatric ones could boil down to a reason as simple as that. There is simply not as much data, or institutional infrastructure, around pediatric data.

The labs that get funded are the ones with the most data published. But what if we could flip that model? What if we rewarded researchers for sharing that initial raw data? What if researchers empowered each other instead of having to compete for the same research dollars?

Dragon Master Foundation was formed with the purpose of building an infrastructure for sharing data between researchers, but we’ve learned that the problems are more intrinsic than that. Scientists are pushed to publish their work, but in order to get it past peer reviews, they often simplify the work so much that their results can’t be replicated. Over time, we’ve created a system that virtually requires all researchers to work independently, first because of funding, and second because they can’t simply pick up where someone else left off.

The more I learn about how our researchers have to fight for resources and funding, the more concerned I am. It also makes me that much more motivated to fund a new system. A system that rewards researchers for working together. A system that empowers them to do better work with faster results. A system that will pool resources instead of building data silos.

We want to encourage foundations to put their funding behind researchers who are willing to share data. If we want to break down the walls between the silos, we have to reward the ones who are doing it. We need to stop sending our dollars to institutions who won’t share. We need to empower the work to be done in the cloud where it can be interactive. We need to treat tissue donations as the rare and valuable resource they are, and give them a place where they can be accessed for future generations.

People seem amazed at how quickly we have grown, but it is because of the foundation built by the groups who came before us. We didn’t have to start from scratch. There were already visionaries out there who just needed help to take things to the next level. We recognize and applaud the efforts of the nonprofits who have been building tissue banks and funding sequencing of those biospecimens. We commend the hospitals who took those first shaky steps out into the frontier of collaboration. Most of all, we thank the technology pioneers who have made this type of global collaboration more than just a dream. It is becoming a reality, but the timeline depends on all of us. We have a database that is ready to be used by researchers. What we need is the funding to put it into the web and grow it to include as many records as possible. Each record that we can add empowers the data a bit more and puts us into a space where big data analytics can begin to transform research and medicine. It is what we need to truly empower personalized medicine.

You may not think that you have the power to affect medical research. You might not be a scientist or a doctor. Well, neither am I. But I’m driven to keep families from knowing the devastation ours has known. You CAN make a difference, and oh, I hope you will.

Dragon Master Foundation has a 5K this weekend in Wichita, KS, but if you can’t make it, you can still participate as a virtual walker or runner. That will get you one of our super cool Tiki medals. Or you can host your own event. Or volunteer. Or spread the word on social media. Every action you take makes a difference.

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