Three tips for people who want to participate in a clinical trial
Clinical trials can’t move forward without volunteers. But, the barrier to entry for clinical trials can be inordinately high, starting with public information like a study page or a listing in a database. We share three tips for people who want to participate in a clinical trial, such as having your medical history handy, using a clinical trial search tool, and creating a list of questions to ask a study team.
Have your medical history handy
It’s important to become familiar with your personal and family medical history when starting your clinical trial search. Many databases and study pages will include a list of inclusion and exclusion criteria (factors used to determine eligibility for participation in a study). In addition, some clinical trial matching tools will ask you about certain aspects of your health.
Your primary care provider should have your health records handy. Some websites, such as PicnicHealth, collect, digitize, and encrypt all your medical records, and then arrange everything in one intuitive timeline. You're not expected to have your entire health history memorized, but do your best to know as much about your health as possible, such as lab test results. The more you know about your personal and family medical history (like surgeries, procedures, medications, and health conditions), the better equipped you’ll be to find clinical trials that are the right fit for you. Many clinical trial sites will do a prescreening call or set up a visit to ensure you’re eligible to participate. Don’t hesitate to ask for help, too. Relatives, spouses, caregivers, and friends with whom you are comfortable may be able to help you track down key health records and information.
Use a clinical trial search tool
After you’ve gotten a hold of your personal and family medical history, you’re ready to start your clinical trial search. One of the first places many will tell you to look is ClinicalTrials.gov, a database of privately and publicly funded clinical studies conducted around the world that everyone has access to. However, if you’re not a scientist or researcher, you’ll probably have a hard time reading a listing on ClinicalTrials.gov. Most patients can’t understand complex medical jargon and the presentation of data, including key inclusion and exclusion criteria, are extremely hard to read and difficult to navigate.
Try using a clinical trial search tool like Antidote Match, which offers the promise of clinical trial listings through a simple search process. It all starts with a few simple questions about you, your health, and basic geographic information. Based on those answers, you’ll receive a list of trials that you may be eligible for. Antidote Match uses structured data and proprietary algorithms to explore a patient’s eligibility for every trial. The goal of our clinical trial matching software is to take complex information included in a trial listing and translate it into an easy-to-read format.
In a listing on Antidote Match, you’ll see the condition area, the intervention being studied, the purpose of the trial, the sponsor, the unique study ID, the eligibility requirements of the trial, and site locations and contact information.
Create a list of questions to ask the study team
After you've learned the basics about a trial, the next step is to contact one of the available trial sites. Before you join, you’ll be able to learn more about the study and the screening process. If you don’t know where to start, we’ve created a handy list of questions to ask the study team, which include:
- How long will the study last?
- What is the goal of the study?
- Will I be paid for participating and reimbursed for my expenses?
- Does the study include a placebo?
- How will I receive the treatment and/or be monitored?
- Can I continue taking the study drug after the trial if it works for me?
- How will my privacy be protected?
- What can I expect at each study visit?
- What happens if I leave the study early?
- What happens if my condition gets worse or I am injured during the trial?
- Who will be conducting the study?
- What did previous studies find out about the treatment? Have the results been published?
- What are the potential risks and benefits of the study drug?
- Will I receive follow-up care after the study?
- Will the results of the trial be provided to me?
If you ultimately decide to participate in a trial, don’t hesitate to bring someone with you to study visits. Taking a caregiver, relative, or a friend who you are comfortable with is a good idea, since you’ll likely receive important information. The person with you can take notes to help you remember everything later. If you decide to participate in a study in a place where they don’t speak your native language, be sure to tell the study team in advance so they can set you up with an interpreter.
One key reminder: Even after you sign an informed consent form, you can still leave a clinical trial at any time, for any reason.
One of the most important ways to help researchers make medicine more accessible to the public is to participate in clinical trials — and many participants report that taking part allows them to learn more about their health and to feel in control of their healthcare decisions. Interested in participating in a clinical trial? Click below to answer a few questions to see if there is a local match.
