Standing in the corner of a dark room, my eyes took a few moments to adjust to the darkness.
Ten feet in front of me, my mom sat at an eye-testing device the size of an oven. Next to her, a doctor stared at a dimmed screen, with two boxes displayed — one had a close-up of my mom’s right eye showing the inside crosshairs and the other resembled a line graph of what an eye-based Continuous Glucose Monitor (CGM) tracker might look like as it filled in the dots of blood sugar levels throughout the day.
This was just one of about a dozen tests I saw recently while shadowing a clinical trial that my mom took part in at the W.K. Kellogg Eye Center at the University of Michigan Hospital in Ann Arbor.
The center is an eight-story, 230,000-square foot eye and diabetes research facility that cost $132 million and opened in 2010, named the Brehm Center after Virginia couple William and Delores “Dee” Brehm who donated $44 million to make the project happen; she’s a longtime type 1 and the couple is focusing on cure and treatment research (as our friend and fellow D-Blogger, Scott Strumello, wrote about recently).
The current research is headed up by Dr. Thomas W. Gardner in the ophthalmology and visual sciences department at the University of Michigan hospital, where my mom saw co-investigator, Dr. Max Stem. Three of the other four researchers work at the same facility, while Dr. Gregory Jackson is working collaboratively out of the Hershey Eye Center at Penn State College of Medicine — although no patients are being studied there.
Purpose of the study: to learn more about the effects that laser treatments can have on the retinas of PWDs with proliferative diabetic retinopathy (PDR).
“Currently there are no further treatments to offer people with diabetes who already received laser but who still have poor vision,” Stem said. “So, we launched this study to figure out where the retinal defects are in people who have already had laser for diabetic retinopathy.”
“This study is really the first step towards the broader goal of supplementing the retina with stem cells or perhaps even gene therapy to enhance the function of the retina in areas where it isn’t working so well,” he said. “Basically, we are trying to first figure out where the problems are with vision, and once we know that, we’re going to try to restore functioning to these problem areas.”
Stem said that his team doesn’t know of any other researchers doing this kind of study. Once complete, he said the goal will be to publish the findings and then figure out how to enhance the retina parts not functioning well in those PWDs with laser treatment.
The research team has already recruited about 15 PWDs so far and are looking for more study participants. My mom, who’s had type 1 diabetes for 54 years, was patient No. 1 in the study (!), falling into the category of someone who’s had laser treatment for PDR at least six months ago. They’re also looking for PWDs who have PDR but haven’t had laser treatment yet, and as a control group those who don’t have diabetes or this kind of retinopathy. There’s no specific timeline for the study; it depends on when they get enough participants and are able to complete the exams.
Participating involves answering all the basic questions on medical, eye and diabetes history before being subjected to an array of tests over several hours. This includes a full eye exam with pictures; visual acuity tests where you’ll read eye charts; a test to measure your ability to see in the dark (like a cat?); visual field testing to see how you respond to flashing lights; contrast sensitivity to see if you can tell which letters are fading into the background; a photo-stress test with light shined in one eye; reading test with different sized letters; color vision assessment where you arrange colors in a certain order; and then a 20-questions setup where you get grilled about your vision in daily life.
Not to mention an A1C test — whew!
In total, the whole process took us about three and a half hours. At an earlier screening appointment, the doctors had decided to focus only on my mom’s right eye, since that one is worse. So that’s what they had their eyes on (ha!) during this round of research.
Many of the machines and equipment was technology I’d seen and experienced before, but some were new state-of-the art devices. At my eye clinic, we still use paper eye charts. At U-M, they had digital charts powered by a Palm where the doc could switch back and forth using that device.
Some of the machines took pictures of my mom’s eyes, and the printouts showed varying black areas that supposedly signaled parts of the retina that weren’t functioning as best as they could.
One test involved my mom reading a variety of passages with differently-sized texts. Stem said many PWDs say they have more trouble reading the longer they’re living with diabetes, so the researchers are exploring whether the problem involves putting the words together or being able to see how dark the text is and how big the font size is.
“We’re trying to put a number to it, or figure out if it’s just random,” Stem said.
A nugget picked up during the testing that I found intriguing was that the retina is as thick as a piece of tissue paper and it has 10 layers, so the varying tests look at different layers to see where problems might exist.
Still, the most interesting test for me was the one where I stood in the back corner of a dark room. We put a towel under the door to block incoming rays of light, and I privately decided it might be a bad idea to disturb the darkness by looking at my cell phone to tweet the activity .
My mom sat at the front of what’s called the “dark adaptometer” (very Calvin & Hobbes!), which involves a blinking red light you have to pinpoint and some other random flashes of light. Dr. Stem sat in front of a dim red-tinted screen, and with each red light Mom saw and responded to with a handheld button-click, a new dot appeared on the radar screen in front of him. That test was examining how well mom’s eyes adapt to the dark, as the machine’s name alludes to.
It was so dark in there, I could’ve fallen asleep during the roughly 10-minute exam — and Stem said that’s actually happened before and he’s had to wake patients up!
So while it was exciting to know that cutting-edge research was happening before my eyes, it was also somewhat boring just standing in the background. Why not have my own eyes be test subjects? Gosh, my eyes are bad enough and I go through enough testing, I think…
But then again, this whole experience may have changed my mind. Especially after hearing my mom explain why she took part in this study:
“There are many different ways to support the diabetes cause. If you have no interest in raising funds for research or contacting legislators for their support, being a participant in a research study is something else that’s needed. Sure, everyone wants to test out the new gadgets, but what about the not-so-fun things? Someone had to get the first shots of insulin after Banting and Best gave it to their dog. Someone was the first one to get the lasers that now stop or greatly slow diabetic retinopathy. Everything that’s been developed in the past 90 years has been tried and tested on many, when at first it wasn’t known if they would work or not.”
She added, “Trials may be looking for people to get their blood drawn, people to get their eyes dilated, have EEGs, or run on a treadmill… Things we have to do way too often just to keep ourselves alive and not really something we want to do when not required to. But if this could lead to something better in the future, if not for you then for all these people we see being diagnosed every day, don’t you think it might be worthwhile?!”
Whoa, moms always have a way of
guilting inspiring us to do the right thing, no?
She wasn’t given any specific results from this line of eye exams, other than confirmation that her right eye (which has had more laser treatments than the other one) is indeed worse off. But she helped break new ground, as Stem actually thought of some different ways to do some of the tests in the next few days and asked my mom to come back in briefly to go through some more. She agreed. Once even more people go through the study, she’ll get periodic updates on what the team is learning and what comes next from all this.
Interestingly, this is one of two fascinating studies going on at the very same Brehm Center. Aside from the laser-focused one my mom took part in, there’s also a two-year study aimed at better detecting diabetic retinopathy in its earliest stages and understanding how diabetic nerve damage (see neuropathy) relates to eye damage from diabetes. Stem says that study could eventually lead to new ways of diagnosing, preventing and treating both retinopathy and neuropathy.
For those interested, there are many ways to get involved in these studies. You can start by checking out the U.S. National Institutes of Health ClinicalTrials.gov and also the JDRF clinical trials page. Or check with your local medical school-affiliated hospitals and university hospitals that might be doing trials nearby.
If you’re interested in learning more about this specific U-M study or possibly participating, a description and contact information can be found here. Think about it. And maybe bring your mom?