When I first started taking more of an interest in diabetes research and clinical trials a few years ago, I found myself poring over national and local databases listing the studies that involved diabetes. The process was anything but user-friendly.
I had to comb through complicated listings in ClinicalTrials.gov and my local medical institute registry to first find anything relevant, and then attempt to work out what was nearby, whether it was something I had any interest in, and if I might even be eligible for that particular trial. It was incredibly time-consuming and often disappointing to finally find one of interest, and only then discover some "exclusion criteria" that would disqualify me from participating.
So I'm pretty excited about a new diabetes research tool that's a little like an online dating service, in this case matching diabetes patients and researchers. No more need to slog through institutional databases and spend all kinds of time with no guarantee of success! Thanks to the new Living BioBank, established by the nonprofit T1D Exchange, finding clinical research to participate in can be as easy as filling out an online survey, and then being matched with trials for which you are best suited.
All you need to do is sign up and complete an initial questionnaire about yourself. Then you're added to the BioBank, where you'll be matched up with local clinical investigators who might need help on a particular study that fits your criteria. And you don't have to just give blood in advance and let it sit in storage; instead, requests are sent to you on an as-needed basis, depending on your availability and what phase the research is in.
The Living BioBank has its "base of operations," so to speak, at the Benaroya Research Institute at Virginia Mason in Seattle, WA -- meaning that's where participant enrollment is centralized, along with test kit sample collection and distribution to investigators around the U.S.
Kudos for setting this up goes to T1D Exchange, which has been a huge player in advancing diabetes research and patient connections in recent years. For several years now, T1D ExChange has been building out an extensive registry based on its clinical study network around the country. We've seen data from that network presented at past ADA Scientific Sessions, showing greatly increased involvement from people with type 1 diabetes. Part of that effort has been storing samples for whenever scientists may get around to needing it. About 50,000 blood samples have been provided, according to Dr. Carla J. Greenbaum, a clinical investigator who leads the BioBank and heads up the Diabetes Research Program at Benaroya Research Institute.
"But we don't just want freezers of samples -- we want living examples to study. That's where the BioBank comes in now," Greenbaum tells us.
For example, Greenbaum says if researchers are studying retinopathy, they can go through the database in real-time and immediately find 280 people who have ID'd themselves as living with that condition, and now the BioBank can each out to those people immediately to see about participating.
"This is a way to go beyond what we've had before," she says.
The BioBank has been around in some form since last year, but most of that time has been spent building and tweaking it, and just recently at the start of 2015 did the T1D Exchange go into "full court press" on this effort, she added.
About 1,800 people have signed up for the BioBank as of mid-March, and Greenbaum says they're hoping to recruit a few thousand more in the coming months. Since they don't know how many would be the best number to include, they're shooting for 4,000 - 5,000 people in order to cover any requests that might come in from scientists.
(Note: I'm one of those, as I signed a form allowing for a sample to be sent in about a year ago.)
As of now, there aren't many tools for BioBank participants to see exactly what's happening within the research they're participating in. That's a tricky grey area, given all the privacy concerns and how details of some research can't be shared publicly, as it could influence study participants.
But Greenbaum says the T1D Exchange is working on newsletters and different communication methods, and that in the future, they hope to faciliate more of a dialogue with people who are participating in research trials. That could even be something weaved in the organization's Glu online community, allowing more patients to share real stories of participating in research.
Greenbaum also says it's interesting to watch the bigger societal trends on personalized medicine, as outlined by President Barack Obama at the start of the year, and the recent mobile health news where Apple unveiled its ResearchKit as a way for people to use their iPhones to easily connect with medical research opportunities.
It all comes down to creating better access to medical research for ordinary folks, with a personal touch.
"It's a big discussion out there. Apple and Microsoft and others continue evolving, and we want to jump on that," she said. "Those (efforts) are making people more aware of these research tools, and we're hoping that it's a continued process that will allow for more interested people to see the research and more scientists to connect with those people."
In the past, I personally had most success finding clinical studies to participate in by word of mouth -- at the suggestion of friends and colleagues -- like the Locemia "up the nose" glucagon study I took part in last Spring.
But now, thanks to the BioBank's "study search" service, there are more studies I'm aware of and can watch for local recruiting opportunities.
I'm always glad to contribute to science in whatever small way I can, and I'm grateful for any tool that makes it easier -- given all the other life and diabetes tasks I have on my plate.
I hope you'll consider using it too!