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Neurodivergent and Participating in a Clinical Trial? These Tips Can Help.

By: Heidi Green, COUCH Health

Navigating the medical system as a neurodivergent person can sometimes be difficult. Many spaces and interactions aren’t as accommodating as they could be — and the same can be said of the clinical research space. However, there are ways to make trial participation less stressful. 

Ask For Accommodations 

One of the most effective things you can do to make your clinical trial experience work better for you is to ask for what you need. Here is a sample list of the kinds of accommodations that your clinical research team should be able to provide you with. Feel free to share this with them, or customize it to meet your individual needs. 

Examples of What to Ask For 

  • Lighting: You can ask for the lights to be dimmed, or permission to sit in another room if the overhead lighting is too bright. 
  • Sound: Request noise-cancelling headphones, or permission to sit in a quiet space if the room is too busy or noisy. You may not be able to wear headphones during certain parts of the trial, but you likely can when in a waiting room. 
  • Appointment times: Let the research team know if you prefer multiple methods of appointment tracking to help with time blindness, energy management, and organization. For example, you could request written notes listing out all appointment times as well as reminders via email and text. 
  • Task management: Ask to be given one task or project at a time — such as one survey to complete then the next one rather than receiving a pile of papers to complete all at once. You may also request a guide or assistant to help you go through the documentation if you’d like. 
  • Breaks: Talk to your trial team about building breaks into long appointment days, such as those that include multiple clinic assessments on the same day. 
  • Communication: Let your support team know up front that you prefer transparent communication about what, when, and why things will happen throughout the trial, including what the outcome measurement process will entail (e.g., appointment 1, time, date, what’s included). You can ask for written communication to back up verbal communication to support processing, information retention, and understanding. 
  • Touch: If you struggle with touch, letting the trial team know ahead of time is important. You may also want to let them know if you have an aversion to needles, and that there is evidence to suggest neurodivergent people experience pain differently. Ask for the ability to lay down if you have a concern about fainting. 
  • Clutter: You can request minimal unnecessary visual clutter in the spaces where you will spend time (e.g., lots of colorful posters in the clinic may overwhelm you). 
  • Travel support: Inquire about organization support for any travel to and from the clinical trial site. 

More Neurodiverse Research Starts with You 

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Keeping research teams accountable and ensuring that gatekeeping and implicit bias don’t exclude patients who should be included is essential to an improved research landscape. While such barriers have certainly posed a challenge to participation in the past, now is the time to change that.  

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They Gave Me 3 Years to Live. 30 Years Later, Here Are My Tips for Participating in Clinical Trials.
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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. 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Want to Make Money From Home While Saving Lives? Participate in Clinical Trials
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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.  

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By: Scott Stout, MedVector Think of the biggest medical breakthroughs of the modern era. Anything you can name, from the end of smallpox to the recent development of COVID-19 vaccines, owes its existence to clinical research.   Clinical research uncovers new or improved treatments for both rare and common conditions, and clinical trials confirm their efficacy and safety in humans. Both clinical research and clinical trials are essential for moving medicine forward, saving lives, and increasing quality of life for you, your loved ones, and your community.   By understanding what clinical research is, why it matters, and how to break down barriers to participation, you can become part of this essential process of discovery. And why should you consider it? 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They take discoveries from the lab into practice, bringing the latest developments in medicine and technology to communities like yours. Without clinical trials, medicine simply couldn’t evolve, and, more importantly, treatments that save and improve lives wouldn’t be able to reach the people who need them.  How You Benefit From Clinical Trials   The benefits of clinical trials for science as a whole are clear, but what about the benefits for people who participate in these trials?   Clinical trial participants benefit in many ways. You:   Barriers to Clinical Trial Accessibility   If clinical trials are so essential, why have 91% of Americans never participated in one?  Some barriers to trial access and participation include:   But what if the doctors you already know and trust could offer clinical trials as a care option? Even considering the barriers to clinical research, studies suggest 75% of patients would participate in a clinical trial if it were recommended by their doctor. 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