I’m About to Start a Clinical Trial. Now What?

How do you give back? Whether you volunteer your time, donate to causes you believe in, or help your community in other ways, doing your part feels good. As you think of ways to make a difference, clinical research may not be the first thing that comes to mind. However, you may be shocked to learn just how much of an impact participating in a trial has.   Clinical Research Changes Lives  Clinical research is the process of making sure new medical discoveries are safe and effective. Participants — everyday people who either have a medical condition or who participate as healthy volunteers — make this process possible.  When you participate in clinical research, you can be a part of:   These positive effects ripple throughout communities. As a clinical trial participant, you can give the gift of health to a wide range of people. A new treatment that you contribute to through clinical research could save or improve the life of a friend or family member; it could also help a stranger across the country or make life better for future generations.   Paying It Forward  Even as clinical trials continue to improve medicine, the sad truth is that many people still can’t get the care that a lot of us may take for granted. Imagine if you could be a part of developing new treatments while also improving vaccine access for children in need. By participating in a clinical trial that partners with Greater Gift, you can do just that.   Greater Gift is a non-profit that spreads awareness of the benefits of clinical research and expresses gratitude for everyone involved in the process. They pay the gift of health forward by giving vaccines to children in developing countries through Gavi, The Vaccine Alliance. Greater Gift also partners with Feeding America to provide meals for children facing hunger. Through the clinical operations giving program, researchers can choose to donate on behalf of participants or other contributors.   Make an Impact on Global Health  If you are a research sponsor, partnering with Greater Gift can extend the impact of your trial. Showing gratitude makes a big difference for clinical trial participants. After all, these volunteers make research possible, and a simple thank you goes a long way in showing them you appreciate their contribution. When you pair this gratitude with a donation that pays their impact forward, it has an even greater effect.   If you are a potential clinical trial participant, you can help Greater Gift by increasing awareness of their mission. You can also donate to boost Greater Gift’s reach in bringing clinical research to more underrepresented communities. This work is only possible with the help of donors and sponsors.   A great place to start getting familiar with research is through our resource library. We’ve collected information from a variety of sources from trial participants to national health organizations and put it in one convenient place. Once you’ve learned more about how clinical research works, spread the word with our shareable assets. These graphics make it easy to amplify awareness among your friends, family, and professional network. It only takes a few minutes, but the effect can be significant.  

In 1994, I was a 37-year-old Army major stationed in Michigan with my wife, Cecelia, and our five-year-old daughter, Patrice. Little did I know that learning how to participate in clinical trials would save my life.   One morning before heading to work in January 1995, I went to the doctor’s office to get results from an MRI I had because of persistent back pain, which had been bothering me for six months. The doctor told me I had chronic myeloid leukemia (CML). He gave me three years to live. He then explained that the only potential cure was a bone marrow transplant. But, as an African American, my chances of finding a match were slim. There were — and still are — few people of color on the marrow donor registry. I took it upon myself to change that. I started organizing marrow drives, visiting churches, malls, colleges, and military bases nationwide.  In December 1995, I relocated to Atlanta, Georgia, and continued my efforts.  In April 1996, at a marrow drive in Columbus, Georgia, a local businessman with a different type of leukemia approached me. He shared his leukemia story, explaining how an experimental treatment at the MD Anderson Cancer Center in Houston had saved his life. He urged me to visit MD Anderson, so I did.   I flew to Houston and met a doctor who enrolled me in a few experimental treatments. But by 1998, after three years, they stopped working. I became extremely fatigued, waking up exhausted and in pain every day. Despite organizing and participating in numerous marrow drives, I had not found a matching donor. Time was running out.   As a last resort, I asked my doctor about any other drugs that could help. He mentioned a potential drug that was still in its pre-clinical trial stage. When it was approved for use in humans, I entered the Phase I clinical trial for STI571. I responded exceptionally well. Nine months into the trial, I ran a 26.2-mile marathon in Alaska! Five months later, I cycled 111 miles in Tucson, Arizona, raising funds for leukemia research.   Three years passed, and in May 2001, the FDA approved STI571 as Gleevec. Among the hundreds of thousands of lives Gleevec has saved, I am the longest-living survivor. In the decades since, I got to see my daughter grow up, attend Harvard University and Emory Medical School, and become a doctor. I’ve celebrated birthdays and wedding anniversaries and been there for every special moment, all because of a clinical trial.   The doctors gave me three years to live. It’s been nearly 30 years — and counting.   What Does This Have to Do With You?   Gleevec was the first tyrosine kinase inhibitor (TKI) cancer treatment. Now there are 80, seven approved in the last year. I am humbled and honored every day to not only be alive, but to have helped change the cancer treatment game. Being part of something bigger than myself — the clinical trial — felt so good that I decided to dedicate my life to clinical research education and patient advocacy. Because the more people know about clinical trials and how to find a clinical trial, the more lives will be saved today and in the future.   Maybe by telling you my story, you’ll be inspired to be part of something bigger than yourself, too.   How to Participate in Clinical Trials  Clinical research is different from what it once was. Back when I was in the Gleevec trial, I did everything by myself. I had to find a place to live in Houston where I stayed for three months, and then find my way back to Houston every 90 days for about three years. These days, there are patient advocates, support services, and more, all dedicated to making research participation as easy as possible.   Despite the differences, there are things that hold true. To participate in clinical trials, you need to know the benefits, do your homework, and start your research journey as soon as possible. In addition, you can enter a trial in a later phase and can withdraw from a trial without penalty.  Know the Benefits of Clinical Trials  Clinical research is essential! Every prescribed drug in your medicine cabinet has gone through a clinical trial. Clinical trials provide treatment at least equal to the current standard of care. When you’re a clinical trial patient, you not only access the newest care (often for free), but you also get the chance to contribute to the future of medicine.   This is especially true for patients of color. Many racial and ethnic minorities aren’t well-represented in clinical research, so it’s even more important for us to step up and participate. In fact, new regulations have been introduced in the industry that put requirements on patient diversity. Otherwise, tomorrow’s treatments won’t be as effective for everyone.   Do Your Homework   Your doctor may not offer clinical trials unless you ask. You need to do your own research so you can talk to your providers about trial options.  Luckily, there are an abundance of clinical trial resources out there, from advocacy groups to government websites.   You should research clinical trials even if you’re healthy or happy with your current treatment. First, many trials need healthy volunteers. Second, a clinical trial might not offer you a better outcome or prognosis, but it may help your quality of life or help educate you on your condition.   Start Now   Trials move slowly, but they go fast once they get going. I first heard about clinical research 18 months before the Gleevec trial. If I hadn’t known to ask the doctor in Houston, I would have missed out. Don’t wait. Begin your research, get on lists, and talk to your doctor now.   Turn 3 Years Into 30  My biggest takeaway on how to participate in clinical trials? Leave no stone unturned.   If you’re not trying clinical research, you haven’t tried every option. Perhaps a clinical trial won’t mean the difference between life and death for you, but it might make a difference in your quality of life. It might mean survival for someone else today, tomorrow, or in 30 years.   I invite you to be part of something bigger than yourself by exploring the resources on Clinical Trials For All to learn more about clinical trials or helping us spread awareness. 

Have you ever wondered how new medicines and treatments are developed? The answer is clinical trials. These studies test how well new medical approaches work, and they are an important step in bringing new treatments to people who need them.   For these trials to work best, research participation needs to include all kinds of people: from different racial or ethnic backgrounds, across different regions, and different sexual orientations and gender identities. That’s where you come in. If you’re part of the LGBTQIA+ community, your participation in clinical trials is more important than you might realize. Your experience and your health matter. By participating in clinical trials, you can help shape the future of health care for yourself and your community, now and for generations to come.   Why LGBTQIA+ Trial Participation Matters  Historically, LGBTQIA+ individuals have often been left out of medical research. This means that fewer LGBTQIA+ people have been involved in studies compared to the percentage of people who are part of the community overall.   This lack of representation has a real impact. LGBTQIA+ people often face unique health challenges. For example, studies show higher rates of certain cancers and mental health conditions in some LGBTQIA+ groups. By participating in clinical trials, you can help researchers better understand these differences and develop treatments that work for everyone.  There are also some health concerns that are specific to LGBTQIA+ individuals. For instance, transgender people may have unique needs related to hormone therapy or gender-affirming surgeries. When LGBTQIA+ people are included in research, it helps health care providers offer more informed, compassionate care to all patients, including those with diverse sexual orientations or gender identities.  Challenges and Solutions in LGBTQIA+ Clinical Research Participation  LGBTQIA+ individuals may face some unique challenges when it comes to clinical trials. But for each challenge, researchers, organizations, and communities are working on solutions, as reported by Citeline:   By getting involved in clinical trials, you can also be part of the solution! Your participation helps researchers learn how to make trials more inclusive and accessible. It also sends a message that LGBTQIA+ health deserves attention.  Benefits of Participating in Clinical Trials  We’ve talked about why your participation matters for the LGBTQIA+ community as a whole, but there are also many potential benefits for you as a participant:  Every clinical trial is different, and the benefits can vary. It’s important to discuss the potential benefits and risks with the research team.  How to Get Involved in Clinical Trials  Ready to take part in a trial? Here are some ways to get started:   Remember, you always have the power to choose which studies you want to be part of and to ask for what you need during the process.  You Can Make a Difference  LGBTQIA+ participation in clinical trials is crucial for advancing health care that truly serves everyone. While there may be challenges in participating, there are also organizations and researchers working hard to make clinical trials more accessible and inclusive. By getting involved, you can become part of this positive change.  Whether you decide to participate in a clinical trial, share this information with others, or simply learn more about LGBTQIA+ health research, you’re taking an important step. Every action, no matter how small, contributes to a future where health care truly serves all of us.