Why volunteer for research studies?
Before any new medical treatment, therapy, or device is approved, it must first be tested through clinical research studies. While some research studies seek participants with illnesses or conditions to be studied in the clinical trial, it is not always necessary to have a specific illness or condition to participate. In fact, there are many trials that need healthy volunteers.
For those who have never volunteered for a clinical trial, there are several reasons why one might be interested. These reasons include access to experimental treatments and therapies, contributing to the advancement of medicine, receiving specialized care, having more treatment options, and the possibility of reimbursement.
Why should I look for clinical trials near me?
Reason 1: Clinical trial participants gain access to experimental treatments and therapies
Because medical studies are evaluating potential new treatments, those who participate in research are able to receive these cutting-edge therapies as part of the trial. For those whose symptoms aren’t already well managed, accessing a new option can have a significant impact. Furthermore, in many cases, if the treatment is successful, patients can continue to receive it after the trial concludes.
For Michelle Schienle, who blogs at Crohnically Blonde, participating in a trial allowed her to go back to work after her Crohn’s disease diagnosis. “Before I started taking these experimental drugs, I was at this point where I couldn’t work, I couldn’t do anything,” she said. A combination of those drugs alone with established treatments, she said is now able to be a “functioning member of society again.”
Why are you thankful for research? - Michelle from Antidote Technologies on Vimeo.
Reason 3: Clinical trials provide participants with access to specialized care
Those taking part in a clinical trial are working directly with specialists and researchers focused on their condition. Research sites are often staffed with individuals that are leaders in their field, and these professionals will be able to answer questions and give participants extra attention.
“I’m super grateful for advances in medical technology, just that small things like being able to see my blood sugar right there on my phone all the time, is just tremendously helpful for somebody like me,” said Christel Groenning Oerum, who blogs at Diabetes Strong.
Why are you thankful for research? - Christel from Antidote Technologies on Vimeo.
Reason 4: Volunteering is an option for rare diseases or those with limited treatment options
Clinical trials can offer a treatment option for research study volunteers where there are no existing alternatives. For those living with rare diseases or conditions that have limited treatment options, the availability of therapies outside of clinical trials is often limited. For these individuals, clinical trials can provide an opportunity to explore potential new treatments when all of the currently available options have been exhausted.
Kimberly Burnette of Beyond Adrenal Disease is active in both the rare disease community and the mental illness community, and research has played an important role in both. “In both of those communities, we would be lost without research,” she said. “Research is the light to our darkness and it gives us hope.”
Why are you thankful for research? - Kim B. from Antidote Technologies on Vimeo.
Reason 5: Participants may receive reimbursement
In some instances, clinical trial participants can earn compensation or be reimbursed for travel costs associated with taking part in a study. Paid clinical trials that offer direct compensation are usually Phase I trials that are testing potential new treatments for safety, not yet for effectiveness against symptoms. Even when a study doesn’t offer direct compensation for time, it may provide reimbursements for travel expenses, meals, childcare, or transportation.
How to sign up for research studies
For those that are interested in finding a clinical trial, searching for studies online is often the best place to start. While ClinicalTrials.gov serves as a comprehensive database for all trials, it does not provide a patient-centric experience. However, there are tools such as Antidote Match that pull data from ClinicalTrials.gov and present it in a user-friendly format. This makes it easier for individuals to search and discover trials that may be of interest. Here are the steps for using Antidote Match:
- Enter location information and a specific condition into the search box
- Enter information about willingness to travel for a trial (a larger radius will bring up more trials)
- Answer a few questions about medical history relevant to the particular condition
- Once trial results appear, users can click each listing to learn more about each particular study. Information includes what type of study is recruiting, and which phase the trial is in
- Users can then contact the study site to learn more, or email the information to themselves in order to discuss the trial opportunity with their doctors
Once a patient has shown interest in the trial, they’ll be contacted about next steps and additional screening within a few days’ time. Typically, studies will involve a round of phone screening and a round of site screening to make sure that patients are qualified to take part in the trial.
If a patient is determined to be eligible for the study, they will then be provided with an informed consent document. This form outlines all of the details about the trial, including compensation, visit requirements, reporting metrics, and more.
Myths and misconceptions about joining a clinical trial
Myth: All clinical trials use placebos.
Fact: It’s true that some trials measure the study drug against a placebo, but this is not always the case. In trials studying conditions where a standard of care is already established, researchers will typically measure the effectiveness of a study drug against existing treatments.
Myth: There are limited protections in place to protect the safety and well-being of clinical trial volunteers.
Fact: Every clinical trial is required to have protections in place to keep patients safe. A trial’s protocol and other materials must be approved by an Institutional Review Board (IRB) to ensure the study is ethical and protects patients’ rights, and the FDA reviews trials before patient volunteers are able to enroll. Additionally, before joining a clinical trial, participants must sign an informed consent form that outlines all details about the trial, and are free to withdraw from the study at any time, for any reason.
Myth: I’ll be treated like a human guinea pig.
Fact: Before potential new treatments are tested in humans, they are extensively researched in a lab setting for safety. Additionally, in the case of Phase II or Phase III studies, the treatment has already been through safety testing as part of the earlier phases. While there is always risk involved in participating in a clinical trial, researchers are legally required to make it as safe of a process as possible, and participants are free to leave the trial at any time, for any reason.
Myth: I’m too far along in my condition to join a clinical trial.
Fact: Clinical trials need volunteers at various disease stages to evaluate different treatments. In fact, some trials may require participants to have been diagnosed with a particular condition for a certain amount of time in order to qualify, or require that they have already tried certain medications and did not find them effective. Regardless of how long someone has had a diagnosis, a clinical trial can be an opportunity to access better treatment.
Myth: There are very few clinical trials for rare diseases.
Fact: The number of clinical trials for rare diseases has been increasing in recent years. One contributing factor to this increase is the growing recognition of rare and ultra-rare diseases. According to RareX, there has been a 33% increase in the number of recognized rare diseases, which has led to a greater understanding of the prevalence and impact of rare conditions and has prompted researchers and organizations to prioritize finding treatments. Plus, in some cases. rare disease clinical trials will pay for travel and other related expenses.
Myth: I’ll never hear about the results from the trial.
Fact: After participating in a clinical trial, it’s natural to wonder about the results and what steps the researchers will be taking next. The results from many trials are published in academic journals, and patients can ask the site staff if and how they can view the results before enrolling.
Myth: My doctor will tell me if there are any clinical trials that I qualify for.
Fact: While it is important for patients to talk about a clinical trial with their care teams, doctors don’t often know about all clinical trial opportunities that are available. For this reason, patients are encouraged to research clinical trial opportunities through tools like Antidote Match and discuss search results with their doctor.
Myth: Clinical trial participation isn’t covered by medical insurance.
Fact: Most clinical trial volunteers don’t have to pay out-of-pocket costs to take part. Generally, the cost of care is covered by the clinical trial, and travel expenses may be covered as well. Most insurance providers cover the office visits and tests that are part of clinical trials, but the study site will be able to provide clear details about what is and is not covered.
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