LGBTQIA+ Research Participation: Why It Matters and How You Can Help
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LGBTQIA+ Research Participation: Why It Matters and How You Can Help

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. 

14 Ways to Support Your Mental Health During a Clinical Trial
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14 Ways to Support Your Mental Health During a Clinical Trial

By: Meredith Boley, Bezyl For people struggling with their mental health, support can be life changing. The same is true for people who participate in clinical trials!  The clinical trial environment, which can sometimes lack adequate psychological support and resources, often creates or compounds mental health struggles. As a result, both patients and caregivers may feel isolated, overwhelmed, and unsupported.  Unpacking the Patient Experience  Clinical research participants can experience heightened levels of stress, anxiety, uncertainty, and even depression. This is primarily due to the unfamiliarity of the trial process, potential side effects of treatments, concerns about their health outcomes, and because they are often managing a significant illness or condition while navigating trial complexities that their social circle may not fully understand.   Caregivers Face Mental Health Challenges, Too  Caregivers of clinical research participants can also face unique mental health challenges. They may experience high levels of stress and anxiety due to the demands of caregiving, concerns about their loved one’s health, and the emotional burden of supporting someone through a clinical trial. Caregivers may also experience feelings of isolation, fatigue, and burnout, especially if they lack a support network or resources to help them manage their caregiving responsibilities.  Why It Matters  Patient and caregiver mental health during clinical trials is important because it directly impacts both groups’ overall well-being, which can affect a patient’s ability to stick to the trial protocol and to manage treatment-related side effects. When mental health is compromised, patients may experience reduced motivation, increased fatigue, and a decline in physical health, impacting trial outcomes and data reliability.   Furthermore, strong mental health support can enhance retention rates, reduce dropout rates, and help ensure the trial’s success. By addressing mental health proactively, both patients and caregivers are better equipped to handle the emotional and psychological demands of participating in a clinical trial, leading to more accurate and reliable study results – which ultimately deliver better treatment options to the people who need them.  14 Clinical Trial Mental Health Tips  With this in mind, here are 14 ways that patients and caregivers can give their mental health a boost while navigating clinical research participation.  Establish a Routine: Maintaining a consistent daily routine can provide a sense of normalcy and stability, which can help reduce anxiety and stress. This includes regular sleep, exercise, mealtimes, and scheduled relaxation or leisure activities.  Stay Informed: Understanding the clinical trial process, potential side effects, and expectations can help reduce fear and anxiety. Patients should feel empowered to ask questions and seek clarification from their healthcare providers. Knowledge about the trial can help patients feel more in control of their situation.  Access Professional Mental Health Support: Engaging with a therapist, counselor, or psychologist who specializes in working with clinical trial participants can provide tailored emotional support and coping strategies. Professional support is invaluable for managing anxiety, depression, or other mental health concerns that may arise.  Practice Self-Care: Self-care activities, such as reading, journaling, meditating, or engaging in hobbies, can help manage stress and improve overall well-being. Taking time for oneself is crucial for maintaining mental and emotional balance during the demands of a clinical trial.  Physical Activity and Exercise: Regular physical activity is proven to boost mood, reduce stress, and improve overall mental health. Even light exercise, such as walking, yoga, or stretching, can help alleviate anxiety and depression symptoms and improve physical health, which can be particularly beneficial during clinical trials.  Nutrition and Hydration: Eating a balanced diet and staying hydrated can significantly impact mood and energy levels. Good nutrition supports brain health and overall well-being, which is important for maintaining a positive outlook and physical health during a clinical trial.  Build a Support Network: Build a support network that includes healthcare providers, fellow trial participants, friends, family members, and community groups. This network can offer emotional support, practical advice, and a sense of solidarity.  Set Realistic Goals and Expectations: Setting achievable personal goals can provide a sense of purpose and accomplishment. It’s also important for patients to set realistic expectations about what they can handle and to recognize their limits to avoid burnout or frustration.  Practice Mindfulness and Relaxation Techniques: Techniques such as deep breathing, meditation, progressive muscle relaxation, and visualization can help reduce stress and anxiety, improve focus, and promote a sense of calm. These practices can be especially helpful for managing the emotional ups and downs that come with clinical trials.  Keep a Journal: Writing down thoughts, feelings, and experiences can be therapeutic and help patients process their emotions. Journaling can also be a useful tool for tracking emotional states as well as identifying patterns and triggers of anxiety or stress.  Engage in Positive Social Activities: Participating in social activities or connecting with friends and family can help reduce feelings of isolation and provide emotional support. Engaging in positive, supportive social interactions can improve mood and provide a sense of normalcy.   Stay Connected with the Research Team: Maintaining open communication with the clinical trial research team can help address concerns or issues as they arise. Feeling supported and heard by the research team can alleviate stress and improve the overall trial experience.  Create a Calming Environment: Having a designated, comfortable space for relaxation or mindfulness practice can help manage stress and provide a refuge during difficult times. This environment can include calming elements like soft lighting, soothing music, or aromatherapy.  Connect with Support Communities: Connecting with others in similar situations can help reduce feelings of isolation and provide valuable peer support.   Find Mental Health Support Tools That Work for YOU  Creating a supportive environment on your own can be challenging, even with the above tips. That’s where support tools come in! Bezyl is an app that offers a personalized platform for mental health tools. Designed to support clinical trial participants and caregivers – as well as other people who’ve experienced trauma – the app includes features like:   Mental well-being is crucial for navigating the challenges of a clinical trial, maintaining resilience, and improving overall outcomes. Don’t hesitate to seek support, whether through Bezyl, healthcare providers, or your personal network.  More About Bezyl: Clinical Trials For All partner Bezyl was founded with a mission to revolutionize mental health support by leveraging the power of connection and community. Our vision is to create a world where mental health support is accessible, personalized, and integrated into everyday life. Our app, available on Google Play and the Apple Store, offers a comprehensive suite of tools designed to support mental well-being. From connecting with family and friends through our Spheres of Support feature to tracking moods and accessing a library of resources, Bezyl is here to help you every step of the way. Visit Bezyl.com. 

Want to Make Money From Home While Saving Lives? Participate in Clinical Trials
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Want to Make Money From Home While Saving Lives? Participate in Clinical Trials

Have you ever wondered if you could make money from home while doing something truly meaningful? Well, you can! By participating in clinical trials, you can earn extra cash and help improve or even save lives. It’s a win-win.   But what exactly are clinical trials, and how do they help you make money from home? Let’s dive in and find out.  How Much Money Can I Make From Home Through Clinical Research?   Clinical trials are research studies that test new medical or behavioral treatments. They are the main way that researchers figure out if a new drug, diet, or medical device is safe and effective in people. To do this, researchers need volunteers. And to attract volunteers, they often offer money.   The amount of money clinical trial volunteers can make varies depending on the type of trial, how long it lasts, and what’s involved. For simple trials, like answering surveys or keeping a health diary, you might earn a few hundred dollars. More complex trials that involve taking medication or following a specific diet could pay more, sometimes even thousands of dollars. Some trials offer payment per visit or session, while others provide a lump sum at the end.   One survey found that the median (or middle) clinical trial compensation is $3,070. The same survey found the lowest payments are around $150, and the highest around $13,000!   How Do I Do a Clinical Trial From Home?   Thanks to modern technology, many clinical trials can now be done from the volunteers’ homes. These kinds of studies are called decentralized trials.   What Are Decentralized Trials?  In a decentralized trial, all or most of the study activities are done outside of a traditional clinical setting. These trials use technology like smartphones, wearable devices, and apps to collect data from participants remotely. This approach allows for more flexibility and convenience, as you don’t have to visit a clinic or hospital. Researchers can monitor your health and progress through virtual check-ins, online questionnaires, and by collecting data from devices you use at home.  How Common Are Decentralized Trials?  Decentralized trials are becoming more common, especially since the COVID-19 pandemic. Many pharmaceutical companies and research organizations are adopting this model to make it easier for people to participate, regardless of their location. In fact, according to one source, about 90% of clinical trials use decentralized components!   How Do I Participate in a Decentralized Trial?   Here’s how you can get started making money from home through clinical research:   Make Money From Home While Saving Lives? Yes, Please.  Participating in clinical trials from home is more than just a way to earn extra money or even learn more about your health; it’s an opportunity to make a real difference in people’s lives. Whether you’re taking medication, following a specific diet, or regularly reporting your health status, you’re helping researchers gather the data they need to make life-changing discoveries.  New treatments and medications developed through clinical trials can offer hope and relief to patients suffering from chronic illnesses and debilitating conditions. By participating, you are part of creating solutions that can reduce pain, help people move better, and help them live longer. Many new medicines and treatments studied in clinical trials save lives! Plus, the discoveries made in clinical trials today will help pave the way for future generations to have access to better treatments and healthcare solutions.  What’s Next?   Are you ready to make money from home while saving or improving lives? Learn more about participating in clinical trials now.   Know someone else who may be interested? You can also help us spread awareness on the importance of research participation.  

Clinical Trial Story Time: A Friendly Intro for Your Child
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Clinical Trial Story Time: A Friendly Intro for Your Child

If you’ve recently enrolled your child in a clinical trial, you may be wondering how to best prepare them for the experience. This blog aims to help you with that effort. The sections below are designed to be read directly to younger children.  What Is a Clinical Trial? A clinical trial is when scientists, doctors, and people who are sick get together to find out how well a new medicine helps people feel better.  Clinical trials …  Why Should You Be Part of a Clinical Trial? In the world of clinical trials, one of the most special things is called “research as care.” When kids like you have health challenges, clinical research can be a great way to get the very best care in the world that can’t be found anywhere else! The trial team helps you feel comfortable and cared for, and you help them find out more about how well the new medicine works. It’s teamwork that’s meant to help you — and lots of other kids around the world — feel better.  What Will Happen During the Clinical Trial? At the start of the trial, the doctor’s team will talk to you all about what to expect. You will learn about how often you’ll visit them in person, some things you might get to do from home, and you’ll get to know some of the helpers who will be with you along the way. You’ll also learn about the different ways the study team will find out more about the medicine with your help!  Who Can Answer My Questions? You can ask as many questions as you want during the clinical trial. You will have a friendly study buddy who you can always ask any questions you have. And don’t worry! You don’t have to think of all your questions when you meet your helper. Even if you think of a question later, you can ask any time.  Final Note for Parents and Caregivers  Do you or your child have additional questions or concerns about the clinical trial process? Visit our Resources page, talk to your doctor, and consider working with a patient advocate. 

They Gave Me 3 Years to Live. 30 Years Later, Here Are My Tips for Participating in Clinical Trials.
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They Gave Me 3 Years to Live. 30 Years Later, Here Are My Tips for Participating in Clinical Trials.

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. 

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

So you’ve enrolled in a clinical trial. Congratulations! You’ve just taken an important step toward contributing to better health outcomes for people all over the world. And for many of you, this may also mean that you are receiving research as care for yourself. This is a big, exciting step and we’re here to help you know what to expect.  Understand Your Trial Phase There are clinical trials for each phase of pharmaceutical or medical device research. Here is a quick breakdown of what the different phases mean to help you understand more about the trial phase you are participating in.  Phase 0: These early exploratory clinical trials test less than 1% of the amount of the drug that will be used in later trial phases. This low-dose trial makes sure the medicine works as expected in the human body before conducting full-dose trials.  Phase I: Trials in this phase are all about safety. This type of trial often seeks healthy volunteers.  Phase II: Now we’re getting into treatment effectiveness trials. If you’re receiving research as a care option, you may be in a Phase II trial.  Phase III: Once a treatment is proved effective, longer-term trials that last several years and involve many more trial volunteers like you take place. This is another trial phase where you may be receiving research as a care option.  Post-market: Once new treatments are approved, ongoing studies may continue to observe the long-term effects of the drug.  Medical device trials: If you are volunteering for a medical device trial, the safety trial phase is called a pilot study, also known as a feasibility study. The effectiveness trial phase is called a pivotal trial. Then once the device is approved, post-market studies continue just as they do for pharmaceuticals.  Informed Consent As a clinical trial volunteer, a research representative will walk you through what is called the “informed consent” process. This is where study staff explain the possible risks and benefits of the trial and everything that is involved in your participation. You will have the opportunity to have any questions answered and confirm that you want to participate after receiving all the information. You can also choose to have a patient advocate support you through this process.  Trial Access The sponsor of your trial will discuss the logistics of trial access with you. Some trials require on-site, in-person visits to participate in the study, while others have some on-site visits and some check-ins that can be conducted from your home or from your existing medical practitioner’s office (called “hybrid trials”). In fact, some clinical trials can be conducted completely remotely with data collected from your home or doctor’s office (called “decentralized or virtual trials”). Your study’s sponsor will explain all the details for your particular trial so you know exactly what to expect.  If travel to the study site is required, your sponsor can answer questions about support with travel financing and logistics.  What Happens When the Trial Is Over? It can take years from the start of a clinical trial to when the study is completed and all data are reviewed and analyzed. Stay in touch with your sponsor contact about study results, realizing that the final results of any study may take quite a long time to be released.  In the meantime, work with your sponsor, patient advocate, and/or your trusted medical team to continue your clinical trial journey.  Want to learn even more about what it’s like to participate in a clinical trial? Be sure to check out our other blogs to discover firsthand stories from patients like you as well as more information about how and why to participate. 

Clinical Trial Myth Busters: Get the Facts About Research
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Clinical Trial Myth Busters: Get the Facts About Research

How much do you know about clinical trials? If the answer is very little, you aren’t alone. 41% of Americans know nothing about clinical research.   If you haven’t heard of clinical trials at all, they are how researchers test new medical treatments and drugs to make sure they are safe and work well. Trials are essential for any new medicine to become available.   If you have heard of trials before, it’s possible some of the things you’ve been told aren’t actually true. There are many clinical trial myths out there, but we’re here to help clear up the confusion.   Keep reading to learn the truth about five common research myths.   Myth: Only very sick people participate in clinical trials  Fact: Many people can take part, even healthy ones  Some people think that clinical trials are only for people with serious, life-threatening conditions and no other treatment options. It’s true that trials can provide vital hope by offering new treatments that aren’t available elsewhere. However, there are many types of research available, and you don’t need to have a severe condition to take part.   Each trial has specific rules about who can join. Researchers may need people at different stages of a condition, from early to advanced, and for both common and rare diseases. Healthy volunteers are also needed in some cases.   The bottom line: don’t rule yourself out of clinical research completely. Although not every trial will be the right fit, many could be.   Myth: Clinical trials treat participants like lab rats  Fact: Participants are respected and protected   One unfortunate myth is that clinical trials are dangerous and that people who participate are treated like test subjects or even “guinea pigs.” The truth is that participants’ rights and safety are well protected.   There are many different rules in place to ensure trials are safe. While risk levels can vary, researchers must explain these risks and work to reduce them. Steps to do this include regular checks throughout the study and ways to report any problems quickly.   Myth: You can only participate from a big city   Fact: Technology opens more ways to join trials   If you don’t live in a major city, you might think there aren’t any clinical trials near you. There is a bit of truth that many trials are often hosted at large hospitals or universities in big cities. However, advances in technology are changing this.  More trials than ever before involve local doctors or even allow you to participate from your home. These options are not available for all trials, but there are more opportunities to take part in research than you might expect, and you don’t always need to travel to a big city. And if you do need to travel, you can find studies that will cover the cost and help with planning.   Myth: Your doctor needs to refer you to a trial  Fact: You can find and join studies on your own  You may think that the only way to get into a clinical trial is through your health care provider. While talking to your doctor about research is a great place to start, it is not the only option. However, you may learn after talking to your doctor that they aren’t involved in or familiar with clinical trials. In this case, it’s important to know that it doesn’t need to be the end of your research journey.   Tools like Carebox, Antidote, or ClinicalTrials.gov allow you to search based on your health condition. You can also add filters to find trials that might be a good fit. Once you see one that could be an option, reach out to the contact for that trial to ask questions and learn more.   Depending on your condition, you may also be able to work with a patient advocate who will search for trials for you and help you throughout the process. You can find an advocate through non-profit organizations related to your illness or, in some cases, through your health care provider.   Even though you don’t need your doctor to refer you to a trial, you can still ask them about how participating might affect your current care.  Myth: Getting involved is too complicated   Fact: Resources can make the process easier   At first, it may seem like you need to be an expert to find and take part in a trial. However, the good news is that this isn’t the case. People from all backgrounds participate in research — and you can, too. There are many resources available to help make this process easier.  Our Resource Library is a great starting point. We’ve collected information from trusted sources about a wide variety of clinical research topics, and you can search based on what you want to learn.   Even if you are not interested in participating in a trial, there are still ways to get involved. Just by reading this blog and sharing what you’ve learned, you can help more people understand the truth behind clinical trials.  

Tips for Searching for Clinical Trials as a Caregiver
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Tips for Searching for Clinical Trials as a Caregiver

If you are a caregiver, you aren’t alone; according to the Caregiver Action Network, over 65 million people in the U.S. (about 29% of the population) provide care for a chronically ill, disabled, or elderly family member or friend. The role caregivers play is different for everyone, whether it involves helping with a few tasks or full-time, live-in care. Across this spectrum, it’s clear that caregiving is essential for our communities and deserves recognition and support.   Caregivers help their loved ones in many ways, but one that may not come to mind at first is finding clinical trials. Enrolling the person you are caring for in a clinical trial can help them find new ways to manage their health, while also benefiting others with the same condition. If you’re interested in learning more about how clinical trials work and your role in finding a trial as a caregiver, the information in this article can help you get started.   What You Should Know About Clinical Trials  Before we explore more details about finding clinical trials as a caregiver, we should first discuss what clinical trials are.  A clinical trial is the process of testing a new treatment option, such as a medication or device. Trials happen in different phases, starting with smaller groups and progressing to larger ones. Throughout every step of the process, researchers follow strict standards to make sure they collect accurate data and keep participants safe. If the trial shows the new treatment is effective, it can be approved to become available to more people.   What does this mean for your loved one? Clinical trials often provide access to treatments that are not available anywhere else, giving them a new option to manage their condition. In addition to the personal benefits, taking part in a trial is also a valuable gift to others with the same condition. It gives hope for new treatment options that wouldn’t be possible without research.   How to Find a Clinical Trial Once you’ve decided that you’re interested in a clinical trial for someone close to you, the next step is exploring trials that could be a good fit. The process can seem overwhelming at first, but the good news is that there are many resources that can guide your journey and support you along the way.   Your loved one’s doctor is a great starting point for discussing clinical trials. Although not all doctors are involved in clinical trials, they will be able to answer some of your questions about the process and how it could fit with any current treatment(s). In some cases, they could recommend a trial that they are involved in or familiar with.   Even if your loved one’s doctor is not involved in trials, there are still many ways to find options. Sites like Carebox, Antidote, and ClinicalTrials.gov are great resources for searching for trials. You can look based on a condition and see key details about the trials within these tools.   From Searching to Finding the Right Fit  During this process, there are many elements to consider when deciding whether a trial is a good fit for the person in your care.   Each trial has different rules for who can participate. This may include how far along the disease is, whether your loved one has or does not have certain symptoms, other conditions, age, and a variety of other factors. Be sure to have their medical history available as you search. If you have any questions about whether a trial could be a good fit, reach out to the contact for that trial. They can talk through requirements with you and give you more details about the kind of participants the trial is looking for.   You should also consider the impact participation may have on you as a caregiver. Is the trial nearby? Will you need to travel to take your care recipient to appointments? Are there options to participate from home? This can help you plan to make sure participating is manageable not only for your loved one, but also for you. Many organizations in the clinical research community are working to improve access. The trial organizers may be able to point you in the direction of resources to help make participation easier, such as patient advocacy networks or support groups for caregivers.  Answers to Your Clinical Trial Questions Throughout the process of finding trials for someone in your care, communication is key. If you have questions, be sure to speak up. Researchers understand the key role participants play, and they should support you in finding the answers you need.   Our Resource Library is also a valuable tool for finding more information about clinical trials. Whether you are actively searching for trials for your loved one or are just starting to look into clinical research, you can make a life-changing impact by learning more and spreading the word.  

Redefining Clinical Trial Accessibility in the Age of DCTs
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Redefining Clinical Trial Accessibility in the Age of DCTs

You want to increase clinical research participation, but access issues keep getting in the way. How can people take part in clinical trials if they don’t know about them, can’t physically reach them, or don’t have the resources to participate remotely?   Uncover solutions to the research accessibility problem in the Clincial Trials For All discussion, “Redefining Clinical Trial Accessibility in the Age of DCTs.” Featuring Lightship patient advocacy and patient experience experts Samantha Eells, Sabina Kineen, Mel Mann, and Allison Rosen and hosted by Alec McChesney, director of business development at SCORR Marketing, this discussion is a must-watch for anyone interested in making research more equitable, diverse, and widespread.   Watch the recording now to explore:  

Different Types of Clinical Research and What They Mean for You 
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Different Types of Clinical Research and What They Mean for You 

Without clinical research, there would be no new treatments, no improvements in our understanding of how diseases work, and no new options for prevention. In short, clinical research is essential.  Not all research is the same. There are two broad types: observational and investigational. They each have different goals and work in different ways, but they both rely on people like you to participate and spread the word.   Read on for an overview of observational and investigational clinical research and learn how you can get involved.   Observational Research: Observing Health Patterns  Observational research gathers data and looks for patterns. If participants have a medical condition, they will continue their usual treatment plan during an observational study. Participants in this type of research do not receive new treatments. Instead, researchers observe and record various data, depending on the goal of the study, while the participants keep their general routine the same.   Participation may involve filling out a survey, meeting with a researcher for an interview, or providing a blood or tissue sample.   Types of Observational Studies  Who Can Participate?   Each observational study will have unique requirements based on what the researchers are interested in. In many cases, both healthy volunteers and people with a specific condition are needed.   Since observational research does not require you to take a new medication or change your routine, you can often participate in multiple observational studies at one time.   Why Does Observational Research Matter?  Observational clinical research provides essential information about how diseases work and what risk factors could be. Each new study gives more information, and it takes many studies over a long period of time to clarify possible links between behaviors and diseases.   What does this mean in the real world? For one, it can help people make more informed decisions about their lifestyles to have a better chance of staying healthy. Recommendations like increasing physical activity, maintaining a balanced diet, and avoiding smoking all have their roots in observational research.   Observational studies can also identify factors outside of an individual’s control that increase the chance of developing a certain disease. This gives doctors the information they need to screen for those conditions sooner, potentially improving and saving lives.   Investigating Research: New Treatments  Whereas observational research gathers information about health, investigational research (i.e., clinical trials) puts this information into practice and tests new ways to prevent, diagnose, manage, and cure diseases.   During a clinical trial, researchers monitor participants to ensure safety and track whether the new treatment works correctly. Depending on the trial, participants may go to a specific location (a trial site) to receive treatment, or a health care professional may monitor them while they undergo treatment at home.   Clinical Trial Phases  Clinical trials have four phases, and each serves a specific purpose.   Who Can Participate?   Like observational research, different trials look for various traits among participants. Along with looking for people with the health condition the treatment will target, clinical trials may have other requirements depending on the specific goals.   The phase of the trial also changes who can participate. Phase I trials often involve healthy volunteers, as this gives the opportunity to study safety before involving those whose disease may make them more likely to have negative effects.   Why Does Investigational Research Matter?  Any advancement in medicine that you can think of owes its creation to clinical trials, from the most common over-the-counter medications to innovative treatments for serious conditions. Investigational research is essential to determine what treatments are safe and effective. Clinical trials can also provide options for those who don’t have many other treatment choices, like those with rare diseases.   Ready to Get Involved?   Whether you’re interested in taking part in observational or investigational research, you have the power to make a real difference for the future of medicine. You can ask your doctor about studies or trials that may be right for you, or you can use an online tool like Carebox, Antidote, or ClinicalTrials.gov to start your search.   And if participating directly isn’t the right choice for you now, that’s okay too! You still can do your part by sharing information and staying informed. You never know who in your network could benefit from this knowledge.