A Researcher’s Perspective: Bringing Patients to Trials to Accelerate Research

Anath-ShalevAnath Shalev, M.D., works on a clinical trial supported by JDRF (the leading global organization funding type 1 diabetes research) titled “Repurposing of verapamil as a beta cell survival therapy in T1D [type 1 diabetes]”. The trial aims to test the safety of a commonly used blood pressure medication (verapamil) in adults with recent-onset T1D and to determine whether taking this medication for 12 months will improve insulin production in these individuals.

Her research will provide the critical first step necessary to officially repurpose this medication to treat T1D. Ultimately, this work should help develop a novel therapy for T1D that is distinct from currently available treatments and enhances the patient’s own beta-cell mass and function. By doing so, it should reduce or even eliminate the need for multiple daily insulin injections or insulin pumps, improve glucose control and quality of life and prevent diabetes complications. This trial is still ongoing and recruiting subjects 18-45 years old, diagnosed with T1D within the last 3 months.

Here, Dr. Shalev shares her insight on the importance of clinical trials to research and the T1D community.

What would you say to those in the T1D community who want to know more about participating in trials?

Aside from possibly getting a chance to try a new approach oneself, this is a wonderful way to make a difference by helping others affected by T1D down the road, and to be actively involved in advancing novel treatments and changing the landscape of diabetes.

JDRF and TrialReach recently launched a new tool to match participants with clinical trials. How might this tool make a difference in T1D research?

When diagnosed with T1D there are a lot of things to think about, get adjusted to, and deal with. Any tool that can help navigate the vast selection of different trials in this critical and challenging time period would make a big difference by bringing the “right” patients together with the “right” trials. Since finding these “right” patients is often a difficulty in clinical studies, this would also help accelerate T1D research in general.

What excites you most about T1D research today?

I am most excited that we finally have promising targets to promote patients’ own functional beta cell mass and thereby address a major underlying cause of the disease.

A Researcher’s Perspective: Linking Scientific Discovery to Clinical Medicine

Carla-Greenbaum-1For Carla Greenbaum, M.D., growing up in the era of space travel and the moon landing kindled a lifelong interest in science. She’s now a leading investigator of the natural history of type 1 diabetes (T1D) at the Benaroya Research Institute, which focuses on finding the cause of autoimmunity and developing targets for treatment. Dr. Greenbaum calls this work “incredibly exciting and inspiring—like landing on the moon!” Her expertise is invaluable to projects like Type 1 Diabetes TrialNet, an international network of clinical trials in T1D supported by JDRF, the leading global organization funding type 1 diabetes research, and the U.S. National Institutes of Health.

We asked Dr. Greenbaum about the excitement of being involved in clinical trials.

What do you like best about working on clinical trials?

I like being a key link in the chain of scientific discovery to clinical medicine. Clinical trials are the result of brilliant scientists’ creative ideas about mechanisms that cause disease, providing hints about how to stop it. Those ideas are then handed off to translational researchers looking for added information about which ideas are true, and that work is then handed off to people like me to do clinical trials to see whether the ideas are correct and can really make a difference in people’s lives.

Carla-Greenbaum-2What would you say to those in the T1D community who want to know more about participating in trials?

In order for research to move forward, we need participants to help researchers answer important questions. The quicker trials enroll, the faster we have answers.

JDRF and TrialReach recently launched a new tool to match participants with clinical trials. How might this tool make a difference in T1D research?

Any tool that connects potential participants to research opportunities in a clear and meaningful manner is imperative in the fight against T1D.

What excites you most about T1D research today?

The most exciting thing about T1D research today is the number of human clinical trials taking place at each stage of the disease. This is a result of so many years of investment in basic research and the efforts of people in so many disciplines. It takes more than a village – it takes an army of passionate people dedicated to stopping T1D.

Living with Type 1 Diabetes, and Taking Action

P5Phyllis Kaplan knows a thing or two about living with type 1 diabetes. She was diagnosed 42 years ago and has been finger pricking and insulin dosing ever since. She is an active fundraiser and supporter of JDRF, the leading global organization funding type 1 diabetes research, and is passionate about the power of personal connection in approaching life with diabetes. Within the last year, she discovered the incredible online community of diabetes patients and supporters, where we at TrialReach met Phyllis and learned her story. It’s a story of empowerment and education and altruism. We love it so much that we just had to share.

In December of last year, Phyllis joined a #DCDE Twitter chat organized by TrialReach and our friends at Diabetic Connect. During the chat, she learned about some of the benefits of clinical trials and about our newest product, TrialReach Match™. Phyllis says she had been thinking about taking part in a trial – she’s always wanted to do more to advocate, and she believes being part of a trial fills that need. She’s tried to get involved with the artificial pancreas trial at Boston University in her area – but, as she says, “take a number, right?” She searched a few times on www.clinicaltrials.gov, and each time she found a trial, she had the same experience. “I couldn’t tell: do I qualify? Do I not? When I saw Boston, I’d call, but no one would answer. It was frustrating.” She found it next to impossible to find and take part in a clinical trial.

t1dstrongSo on that December evening, Phyllis visited www.trialreach.com and entered her location into Match. In a few minutes, she had matched to a few trials in her area, and one particularly caught her eye. It was a mini-dose glucagon trial at her home hospital, Joslin Diabetes Center. The time commitment was just a few months, and she felt the treatment being tested was not too much of a risk. She got in touch with the researcher and signed up right away.

Phyllis was pleasantly surprised by her trial experience. She says it was really interesting to get an inside look at the research happening at Joslin: “You always hear research is being done, but when you can actually see it listed out on a white board in a lab, it feels different.” And, medically, she says the trial “forced me to look at things related to my overall health that I’ve eased up on. I was a lot more in tune with my overall health while I was in the trial.” Her advice for people looking for a trial is to ask questions: “I would encourage anybody to really listen and find out as much as you can before you sign up.”

She’s enthusiastic about continuing to contribute to the body of diabetes research by finding and taking part in additional clinical trials. She says, “It’s great to see so much in motion, and to know how many people are focused on working to bring better diabetes management tools to market…we’ve come a long way in the 42 years I’ve had type 1 diabetes and it’s exciting to see what happens next.”

You can join Phyllis in contributing to the development of new therapies for type 1 diabetes! Learn more at www.jdrf.org/research/clinical-trials/ or www.trialreach.com.

To Cure Cancer, Start with Data

The importance of the Vice President’s speech at Datapalooza and the work being done at TrialReach

By “e-Patient Dave” deBronkart, an international keynote speaker, author, and health policy advisor who serves TrialReach as Special Advisor for Patient Perspectives

joe bidenIn May, the seventh annual Health Datapalooza conference in Washington brought together thousands of people from I.T., medicine, big business, and startups to talk about how information can change whether healthcare achieves its potential. I say “can change,” not “is changing,” because these problems are hard, and merely inventing something is not the same as change or value.

A key shift was apparent this year, a message heard far more than before: medicine must start thinking about its problems from the patient’s point of view. Nowhere was that clearer than in the address by Joe Biden, Vice President of the United States.

For the first time, this Datapalooza included dozens of patient voices. That’s important, because the culture of medicine (and industry) has always been to think from the professional’s point of view, and that culture is now officially obsolete.

I say that because in 2012 the Institute of Medicine (now Academy of Medicine), a body of 1200 accomplished physician leaders, pronounced in a 382 page report Best Care at Lower Cost that “the learning health system is anchored on patient needs and perspectives.” [emphasis added] And there’s no such thing as “anchor by proxy” – you need the affected person to be there in the room.

Biden’s speech showed this in spades. Listen:

When you have someone near and dear to you … somebody you love, someone dear to you, and they’re in trouble … you try to learn as much as you can. As rapidly as you can. In as much depth as you can … to see if you can help

Learn. Rapidly. In depth. Hear that? It’s the hunt for information. In my book Let Patients Help one of my key teachables is “We all perform better when we’re informed better.” Nobody – clinician or patient – can perform to the top of their potential if the information they need isn’t there. It showed up time after time in Biden’s story.

“Data liberación!”

Of course at Health Datapalooza, data and information are always in the spotlight. At the first one in 2011 Todd Park famously cried, with his boyish and boundless enthusiasm, “Data liberación!” He was announcing the release of hordes of health data from government databanks, for entrepreneurs to use in building companies, just as America gives away its weather data to companies like The Weather Channel. It’s a healthy process, a good use of taxpayer money, to gather data that would be prohibitively expensive for any one company to develop on its own, and use it to seed an ecosystem of firms that “pretty it up” to show the public.

But data alone isn’t the answer; for complex problems we need to extract the information from the data. That’s hard, and it’s what TrialReach strives to master. You might call it “información liberación.”

A major recurring problem in clinical trials is that connecting trials with eligible patients requires carefully extracting information from the piles of data that are required for regulations. Without that match, no trials happen and no results are published, and, in some cases, no lives are saved. (This is real to me at a gut level, because nine years ago my own life was saved from Stage IV kidney cancer, and one factor was the clinical trial I was in.)

TrialReach’s analytical engine strives to accelerate matching patients and trials by digesting the regulatory documents and turning them into questions an ordinary person can cope with. It’s especially important in cancer, where time may be tight and stress may be high.

Clarity is power.

049_Biden3_smallerJoe Biden talked about how progress is held back – care is held back – when information exists and isn’t where it’s needed. That shortfall impeded care in his son’s case, even though he had as much power as anyone in the world. Listen to his speech, and through his professional demeanor, you can hear the pain, and you can hear his determination that this shall change.

Clinical trials are a different part of the medical heavens but the fundamental shortfall is the same: when a trial exists that might serve a patient, and when a patient has a need but can’t find a trial, the whole process must necessarily fall short of what was possible.

Nobody can contribute, nobody can achieve, to the top of their potential if they don’t have information they need. Sometimes that information simply doesn’t exist – but when it does exist and can’t be found, or can’t be understood, I say that’s a tragedy.

This is the problem TrialReach strives to solve. The work is not easy, but it’s important. Clarity is power.

If you’d like to view Joe Biden’s full speech, check out the video below:

Photos via Healthcare Informatics and Forbes

Trial Chat: What You Missed

Thanks to Healthline for this guest post! Click here for the original article. 

Screen Shot 2016-05-25 at 12.24.36 PMOn May 20, 2016, we partnered with TrialReach, JDRF, and CISCRP to host a Twitter Chat about clinical trials. Thanks to your participation, the conversation provided great insight into the challenges and barriers facing clinical trial participation, as well as the opportunities we have to improve access.

Read on for some of the highlights of our #TrialChat. (Some tweets have been combined or modified for clarity.)

 

Q1. Why are clinical trials important?

@CISCRP: To find treatments and cures for conditions and diseases that affect the world! Without clinical trials medicines wouldn’t exist. Clinical trials help new drugs and treatments come to market. More importantly, trial participants make that possible.

@ResearchAmerica: Clinical trials are important to test the safety and effectiveness of certain treatments, drugs or devices.

@FingoHead: Clinical trials my life back. Participation moves science forward and improves quality of life for all. Just look in medicine cabinet and see why clinical trials matter. From devastating disease to a stress headache it takes research.

@TrialReach: Every single medicine we take today went through a rigorous drug approval process that involves clinical trials. There can be no medical progress without these trials – including the researchers who run them and the patients who take part.

@INC_Research: Clinical trials are vital to the development of new drugs and treatments. Without clinical trials, patients would be cut off from the therapies and care they need.

@JDRF: Clinical Trials are the way we advance effective treatment options that can offer the greatest good. Every case of type 1 diabetes is different. Clinical trials help us understand how treatment options fit individuals.

@FDAOMH: Clinical Trials help doctors and scientists better understand, treat and prevent diseases. Minorities should participate so doctors and scientists can test the medicine in the patients most likely to use it. This is important! Age, sex and race may change how you respond to medicine, but most people studied are white and male.

@Campaign4Cures: Clinical trials are important because they expand our knowledge of science and medicine and involve patients in research.

@Alzheimers_NIH: Participate in research to learn how Alzheimer’s works and to study ways to prevent and treat it. Watch this video to learn about why participating in Alzheimer’s research is so important!

@iCANResearch: Close to 50% of medications used in children have not been studied in children. For NICU that’s 90%.

@CureClickTeam: Clinical trials are vital to medical advancement. No clinical trials = no medicine.

Q2: Where can people find out about clinical trials?

@CISCRP: Talk to your doctor for suggestions, look for trials online usingclinicaltrials.gov or CISCRP’s free searchclinicaltrials.org

@Alzheimers_NIH: For the latest in Alzheimer’s and dementia trials, use this searchable database.

@CISCRP: See our resource page with different ways to find clinical trials.

@asipocz: I second! @CISRP’s resources are easy to use and understand for learning more about clinical trials.

@Campaign4Cures: The NIH has an entire database for info on finding clinical trials and research.

@forte: These services are working to make clinical trial information more accessible for patients.

@TrialReach: Our friends over @CISCRP have some excellent resources for patients to learn about trials. Doctors also play a key role in educating patients about opportunities to take part in research!

@Alzheimers_NIH: Yes! Suggest trial participation at the time of Alzheimer’s or dementia diagnosis! For the latest info on Alzheimer’s or dementia trials, sign up for our monthly e-alert.

@TrialReach: @Alzheimers_NIH Absolutely. Trials as a treatment option and not a last resort is such an important message.

@FingoHead: Also search Facebook. Patient groups proliferate, all sharing info about newest research in disease.

Q3: How can patients get involved with trials if they’re interested?

@TrialReach: After doing research on trials, the hardest part can be finding one that’s right for you. We’re trying to change this with TrialReach Match, through which you can match to trials just by answering a few questions! Check out our initial Match product for diabetes. More therapeutic areas coming soon!

@GoPraxis: Always start with talking to your doctor first to see if you are a fit.

@CISCRP: Get in touch with study coordinator for more info. Make sure to carefully review the informed consent. Consult with your doctor.

@michelerhee: Talk to your doctor! Even if they’re not running a trial, they’re a great resource! If you want more info on a specific trial, the clinical trial listing on clinicaltrials.gov often has contact info.

@JDRF: Also, be sure to let your endo know you’re interested. Many clinics have allocated spots in trials.

@ResearchAmerica: Consulting your physician is the best way to find which trial suits your needs.

@Alzheimers_NIH: Sign up for a registry or matching service to hear about studies or trials available in your area.

@iCANResearch: Talk to your doctors and nurses! Study participants are needed in all varieties – minorities, children, healthy controls, etc.

Q4: What are some of the most important questions to ask before getting involved in a clinical trial?

@CISCRP: What’s the purpose of the study? If the treatment works, can I keep using it? More important questions.

@TrialReach: The most important questions patients can ask are about what the treatment will be and how it differs from the current standard of care.

@JDRF: For trial participation, care of YOUR type 1 diabetes first is most important. Know whether the trial is drug or tech-based, and understand how your type 1 diabetes reacts to change.

@TrialReach: It’s important to understand expectations. How many visits over how long? Do I have to travel? Etc. …Don’t be afraid to ask!

@Alzheimers_NIH: Ask what safeguards are in place to protect participants. More here.

@JDRF: Understand what’s going to be required of you. Schedule? Nighttime checks? Hospital stays? Log books? Ask if there will be monetary compensation for travel, required meals, or a stipend. Ask about side effects and what your endo needs to know – should this be written into your care plan?

@michelerhee: What is being tested? What do they hope to see? What are the possible side effects? What are my other options? Ask to take the informed consent home with you so you and your caregiver(s) can read thoroughly.

@ConsultPolaris: How/when will the results be shared with me?

@Campaign4Cures: Find out its purpose. Why will this be important? How will it advance medical progress and help find cures?

@ronelhentschel: Who is behind the funding of the product and risks of side effects?

@TrialReach: @ronelhentschel It’s definitely really important to understand this!

@FingoHead: What are risks/benefits? What is expected of me? Will I have costs? What tests are involved? What was learned in previous studies?

@helpme_health: Do you have a financial interest in the outcome?

@GoPraxis: Ask how the trial may affect your daily life and about participation requirements.

Q5: What’s the biggest misconception about clinical trials?

@FDAOMH: Many people think minorities don’t want to participate due to historical abuses. Not (all) true! Most of the time, health providers don’t ask minorities to participate.

@CISCRP: That they’re unsafe – they’re safest, fastest way to find new treatments. More trial myths debunked here.

@TrialReach: There are so many! But probably that patients are just guinea pigs. They are partners in research and key to medical advances.

@CISCRP: MYTH: Study volunteers are ‘guinea pigs’ FACT: They are valued partners in research process!

@Alzheimers_NIH: That healthy people can’t participate in clinical trials! We need all kinds of people to understand.

@michelerhee: Clinical trial participants are not guinea pigs! More data may be needed to confirm earlier findings.

@TrialReach: We also hear patients concerned about receiving a placebo. The fact is that most trials test new drug vs. current standard of care.

@JDRF: “It’s going to disrupt my routine.” Many just ask you to log your day to day.

@michelerhee: Not every clinical trial you take a drug. Some are following you over time or asking questions/surveys.

@JDRF: “It’s going to be fun!” Sometimes trials are taxing, both emotionally and physically.

@iCANResearch: Misconception: children are little adults. If medication is effective in adults, it will work for children at lower dose.

@FingoHead: Myth: Once you commit, you can’t back out of a clinical trial. Myth: I’ll probably get placebo. Myth: It’s too dangerous.

@JDRF: “I’m just going to get a placebo anyway.” Not many type 1 diabetes trials are structured as such.

@asipocz: Clinical trials can be a treatment option and aren’t just a ‘pop up’ shop to be mistrusted.

@JDRF: “If it’s not for a cure, it’s not important.” All trials unlock a key to the process.

@TrialReach: @JDRF VERY true. All information is useful.

@FingoHead: @JDRF YES! No study is ever a failure. Something is learned from every clinical trial.

@Campaign4Cures: That they are dangerous or painful. In fact, they are safe and go through rigorous process all before trial.

@ronelhentschel: A lot of trials are focusing on a product to improve diabetes management and not a cure.

@GCPWorks: Misconception: Your doctor will always offer you information on clinical trials.

@TabbyMitchell: That all rare diseases have trials and research going on! Assumption made at EVERY presentation I give!

Q6: How can we tackle these misconceptions?

@CISCRP: Let’s work together as an industry to provide resources that empower patients/public to be more informed about clinical research.

@FDAOMH: Healthcare providers, ask, ask, ask! Share available trials, especially with diverse patients.

@INC_Research: We must help providers communicate the availability of clinical trials to patients.

@Alzheimers_NIH: Get more participants talking about their experiences!

@JDRF: Participants should share their stories – blog, tweet, vlog – once allowed, share your experience!

@Campaign4Cures: Encouraging information – sharing and education at every level within the process.

@TrialReach: Education, education, education! The more information that’s out there the better! Chats like this are really helpful too. And, patients who share stories of taking part in trials can play a big role in tackling these misconceptions as well!

@ResearchAmerica: Understanding what causes the misconceptions and barriers to participation.

@asipocz: Engaging participants during and after the trial so all parties have results and know how they helped.

@NUCATSInstitute: @asipocz This is so important!

@JDRF: Read through the details of all available trials. Many could be great fits!

@Campaign4Cures: By urging @POTUS and Congress candidates to invest, make clinical trials and medical research a national priority!

@JDRF: Maintain an open dialogue with your clinic/endo about what trials are available.

@FingoHead: Begin with clinical trial literacy in school. Why teach science selectively? Both volunteering and being aware of the process, removing stigma and knowing options should be taught early.

@DiabeticConnect: Tackle misconceptions about clinical trials by sharing/archiving stories by participants. –Clem

@TabbyMitchell: By sharing trial experiences within potential trial populations.

Q7: What current clinical trials are most exciting to you?

@michelerhee: I am thrilled by all of the rare disease clinical trials!

@TrialReach: There’s so much happening in cancer that we’re following right now. Precision medicine and immunology could change the game.

@Alzheimers_NIH: We are excited about the landmark A4 Alzheimer’s study that is now recruiting nationwide. Check it out!

@GoPraxis: All of the ongoing clinical research on rare disease is very exciting!

@JDRF: We’re funding 50 active clinical trials to cure, prevent and treat type 1 diabetes.

@TrialReach: We’re so excited about what’s happening in diabetes right now. @JDRF is supporting some amazing artificial pancreas research.

@JDRF: Many we talk to are excited about artificial pancreas and encapsulation. All are valuable to help progress research.

Q8: What’s the most common question you get about clinical trials?

@TrialReach: The most common question we get is: How can I get involved? Where do I find a trial? We walk people through the process on our site.

@JDRF: “When will type 1 diabetes be cured?” Funding promising trials is the best way to get there.

@michelerhee: Is there a trial for me? And then I introduce them toclinicaltrials.gov!

@JDRF: “How can I get involved?” Search for type 1 diabetes trials in your area on clinicaltrials.gov

@ResearchAmerica: Trials in precision medicine, immunotherapy and Alzheimer’s have the possibility to yield great results for medical research.

@Alzheimers_NIH: “Is there an Alzheimer’s trial near me?” We direct them to our searchable database!

@FingoHead: Were you afraid? Answer: Hell yes! But more afraid to live in misery. If this hypochondriac can join a clinical trial anyone can.

Q9: How can we work to ensure trials are designed with patients in mind?

@CISCRP: By getting their feedback! CISCRP patient advisory boards can be a big help. Check them out!

@INC_Research: We need to effectively manage relationships between the industry and the patient. Patient input leads to new ideas that can impact their lives and improve research. When we think like a patient, we can design protocols that offer real-life benefits.

@TabbyMitchell: @INC_Research Yes. Yes. Yes. FDA endpoints don’t always equal value in real life.

@FingoHead: @TabbyMitchell Exactly! Patient perspective so crucial. Build empathetic, meaningful research through understanding.

@TrialReach: Involve patients from the beginning! Treat early engagement as market research, and bake that research into protocols.

@ResearchAmerica: More physician involvement to build trust. Physicians matter in clinical trial participation.

@JDRF: For type 1 diabetes, trials should have patient liaisons who can answer questions 24/7.

@iCANResearch: Design trials WITH patients. They know about their schedule, comfort with level of risk, how they want to be approached.

@ConsultPolaris: You’d never design software without involving the user community. We can’t design trials without involving the patient.

Any closing thoughts to share?

@TrialReach: 80% of trials fail or are delayed because researchers can’t find enough patients to take part, which is bad news for everyone! Let’s work together to connect patients and researchers to drive medical research forward!

@INC_Research: Patients help develop treatment options for others with the same diagnoses.

@michelerhee: Being in a clinical trial can help you and others. But never feel pressured! And you can always drop out.

@JDRF: Researchers don’t just look at data, they have conversations with patients about what worked and what didn’t.

@Alzheimers_NIH: It takes all kinds of people to make research successful. Find a way to participate!

To Our Dedicated Partners on Clinical Trials Day

Last year on Clinical Trials Day, we took an in-depth look at the history of the clinical trial – a 269-year journey from a “like versus like” comparison test of citrus for scurvy to today’s randomized controlled trials. We’ve come a long way, but as we noted one year ago, there are miles to go. And we all need to play a part.

TrialReach is a technology company, and we’ve been hard at work building TrialReach Match™, a tool that allows patients interested in taking part in clinical research to quickly and easily find trials that are right for them just by answering a few questions. But if we build it, will patients come?

The answer is yes: if we build it – and share it – the dream of advancing medical research by helping patients find and take part in trials can become a reality. Which is why we’ve also been sharing Match with partners big and small who can help us connect as many patients as possible with clinical trials. Our partners range from large research organizations to small patient communities, but they have one thing in common: steadfast dedication to providing their communities with opportunities to take part in research. We can’t say it enough: thank you for working with us towards such an important goal!

And today, on Clinical Trials Day, there are a few special partners we’d like to celebrate – those that are willing to go above and beyond to make sure that their members can understand, find, and access clinical trials. We’re excited to offer a special thank you to the following organizations:

JDRF is a leading global organization funding research for type 1 diabetes (T1D). There is currently no way to prevent or cure T1D, but JDRF is using grassroots support, scientific knowledge, and strong partnerships to fund research. This type of commitment to advancing medical research is what we strive for every day.

Juvenile_Diabetes_Research_Foundation_(logo)

BrightFocus Foundation is an organization that plays a key role in driving research and supporting awareness to cure Alzheimer’s Disease, macular degeneration, and glaucoma. Since 1973, Bright Focus Foundation has awarded more than $163 million to scientists seeking new approaches to prevention, diagnosis, and treatment of our target diseases. They are currently supporting nearly 75 research grants in Alzheimer’s alone. Thanks for all you do to make a difference in the lives of those living with diseases of mind and sight.

BrightFocus_Foundation_logo

Lung Cancer Alliance is the oldest and leading nonprofit organization dedicated to empowering those living with (or at risk for) lung cancer to advance medical research and save lives. They have a lofty vision: tripling lung cancer survival by 2020 – and they aim to achieve this through support, advocacy, and education. Taking part in clinical trials falls in each of those buckets, so we thank the Lung Cancer Alliance for their dedication to supporting research so that one day, no one has to live with lung cancer.download

Thanks again to all involved in helping us spread the word about getting involved with medical research! Thank you for helping us make every day a “clinical trials day.”

A Guest Post: The Long Way Back to Believing in Research

By Ryan Fightmaster, Editor of Diabetes Daily Grind. Click here to learn more about Ryan. 

GREER-INEZ-8330-366x550I came to take research for granted. Why? Well, it’s complicated. When first diagnosed, you jump in every clinical trial around, usually at the first mention by your doctor. I joined three as a kid. We’re beyond gung ho at this point, we’re pushing the needle toward a cure. Subtly, the years go by. You look around and think, Man, this technology development is pretty awesome, but I’m still on insulin. To hold the belief that one day you’ll eat with no conscious weighing of risks and benefits (I’m not advocating this for anyone, just getting at a point) while also weighing all the risks and benefits of every choice in your life every day for most of your life, is tough.

Eventually, some of us end up slandering the poor mouse who lost its beta cells (unwillingly I might add) to test a novel therapy that ends up curing said mouse of diabetes. Then, we watch said therapy disappear somewhere down the never-ending FDA approval process rabbit hole, hoping and praying that one day (in our lifetime, or our kids’) it will magically reappear at an affordable price.

Before the dawn of DiabetesDailyGrind, this was my stance: stoic in the belief that I will be taking insulin for the rest of my life. But slowly, that attitude has dissolved and morphed into a knowing, a firm stance that one day everyone will be freed from the daily grind of diabetes – not just those in the artificial pancreas trials, or with the funds to eventually own an artificial pancreas. Why the change of heart you may be asking? Because there are so many people working to make it happen.

In January, I attended the JDRF Type 1 Nation Summit in Oklahoma City, where I saw someone in the artificial pancreas trial speak. It was working. It was actually administering insulin for her, with the help of a continuous glucose monitor. There was something about seeing her live, in person, that tangible experience, that made it click: I have to get involved in research too. Let’s hit the tipping point.

Right about here I found TrialReach. Their website, TrialReach.com, is basically the Tinder of clinical trials (without the swiping, weird spam bots, ex-girlfriends, and guilt). With the worst possible analogy out of the way, we can get to why it works. Much of the time, clinical trials are hard to find and once you do find something, you’re left wondering if a better trial is out there (now it’s your turn to make that last sentence into a Tinder analogy).

At TrialReach.com, you start with your zip code, answer a few demographic questions and a few questions specific to your health, and you’re set up with a list of trial choices, near you, that are likely a match for you. In just 41 seconds, I was linked up with 3 possible trials in Oklahoma City where I fit their participant criteria. One trial testing sotagliflozin’s efficacy in type 1 diabetes patients looks really intriguing, if you’re into the whole kidney excretion of glucose thing. They also provide an email sign-up option, where they send the next available clinical trial your way.

We are close. Ten years ago I would have said that close meant a cure 10 years out. Now, I’m removing expectations – just looking to do my part to push that “close” a little farther. It’s time to get involved.

TrialReach is a partner of DiabetesDailyGrind.com. We believe a little transparency is good for us all. Reprinted with permission.