How to Find a Clinical Trial for Rheumatoid Arthritis

If you are experiencing severe rheumatoid arthritis (RA) disease activity, you might consider a clinical trial for RA. In a clinical trial, you have access to the newest treatments and additional care from clinical trial coordinators, who are generally rheumatologists (medical doctors trained in diagnosing and treating arthritis and other disease of the joints, bones, and muscles) and scientists knowledgeable about RA.

Even with mild or moderate disease, entering a clinical trial can allow you to help researchers better understand RA's effects and contribute to bringing about better medicines and treatment approaches.

This article will discuss clinical trials, their efficacy and safety, reasons to participate, trial recruitment, and what you need to know about becoming part of a trial.  

There is no cure for RA. It is a lifelong condition. Symptoms such as joint pain, stiffness, and fatigue will come and go, fluctuating between periods of flare-ups (increased symptoms) and remission (no disease signs or low disease activity). 

RA is an autoimmune disease in which the immune system malfunctions and attacks its own healthy tissues. With RA, attacks are focused on the linings of the joints (synovium), although it can affect any part of the body. Researchers do not know what causes the immune system to malfunction, but they suspect genes, hormones, and environmental risk factors might be to blame.

You can manage and treat RA with medicines, lifestyle changes, physical and occupational therapies, and surgery. These can help slow down or stop damaging inflammation and reduce pain and other RA symptoms.

People with RA experience the disease at different severity levels—mild, moderate, and severe. People with mild or moderate disease tend to respond well to treatment, although some trial and error with different medications might be necessary.

Some people with severe disease do not respond well to treatments and often go on to develop joint damage and experience disability and disease complications. Fortunately, RA treatment has improved and will continue to, which means potentially enhanced treatment outcomes regardless of disease severity.

What Are Clinical Trials?  

When scientists and healthcare providers want to test a new medicine, device, therapy, or treatment strategy on a group of people, they conduct a clinical trial. A clinical trial can help find new and improved treatment methods and ways to prevent or diagnose specific illnesses.

Clinical trials generally test treatments designed to treat a particular illness. The drug or treatment method is usually unavailable to the general public or to others with the same health condition not part of the trial.

Researchers must follow strict rules and considerations in clinical trials. They will test against the best available practices or medicines to find something that works better. Clinical trials can be helpful for people with severe health conditions who have run out of effective treatment options.

With your help and that of others with RA, researchers can answer questions on the safety and effectiveness of a new RA treatment, how well that treatment might work, whether that treatment is more effective than other treatments, and potential side effects and risks.

Efficacy and Safety

Before recruiting for a clinical trial, scientists will test new treatments using lab experiments. Next, they will use animal subjects. Once they can ascertain a particular drug is safe and effective, clinical trials on people can start. Initial studies involve small groups and then move on to larger ones. 

The Food and Drug Administration (FDA) regulates clinical studies in the United States. Every study is reviewed, approved, and watched by an independent panel of doctors, researchers, and the institutional review board (IRB).

The IRB ensures study participants' safety, welfare, and rights and that studies are conducted ethically. They also ensure that health risks are reasonable compared to the benefits gained.  

Even with participant safety in mind, there is the potential for side effects, adverse events, or for the treatment or trial method to cause discomfort. Also, treatment may not work for you, or it may not be better than other treatments.

It is also possible that you are not part of the group picked for treatment, and you end up being part of the control group, which gets the placebo drug (one that is inactive), or a sham treatment (one that mimics the treatment being tested but should have no effect) or a standard treatment.

Reasons to Participate

Incredible breakthroughs in the treatment of RA have been achieved through clinical trials. New drugs and treatment strategies have improved the lives of people living with RA. They have also led to less joint damage, fewer disease complications, and higher remission rates.

For RA treatment to keep moving forward, people need to participate in clinical trials, and there are many reasons for doing so.

Opportunity to Receive Free RA Treatment

When you participate in a clinical trial, all related treatments and medicines needed for the trial are provided to you at no charge. Some studies last months or even years, which means you are getting long-term care from the study you are participating in.

You might also be allowed to continue using an effective therapy after the clinical trial has ended, but that varies based on the study rules.

Being involved in a clinical trial can give you access to treatments that are not widely available. A research study might also provide you with access to medicines your health insurance would not have paid for, or you could not afford.

All trial medicines need to pass rigorous FDA guidelines before they even get to trial participants, so you are not in any serious harm during any part of the study.

Health insurance can sometimes cover costs for clinical trials. The Affordable Care Act (ACA) prohibits an insurer from denying or limiting coverage for routine medical care for someone involved in a clinical trial if they were entitled to that care without the trial.

Raise Awareness  

Most people are not aware of what clinical trials involve and their importance. When you participate in a clinical trial, you can share your experience and educate others about the importance and benefits.

The outcomes of clinical trials help healthcare providers and scientists better to understand RA, improve prevention and diagnostic methods, and enhance treatment and care.

But this progress can't happen without people participating and spreading the message about clinical trials. You benefit from being a part of a clinical trial, and so can so many others living with RA.

Taking Stake in a Future RA Cure  

When you participate in an RA clinical trial, you are helping researchers take significant steps toward the future of RA care. You offer hope to others with RA and the researchers working hard toward better treatments and potentially a cure one day.

Because RA runs in families, you are helping future generations, including possibly your own children and grandchildren, when you contribute to research efforts.

Criteria for RA Clinical Trial Recruitment

Each clinical trial will have its own recruitment criteria. These criteria might include factors like age, sex, the severity of RA, previous treatment, and other medical conditions.

Depending on the type of RA study, a clinical trial might exclude some people from participating. For example, RA clinical trials often exclude people with low C‐reactive protein (CRP) levels (inflammatory markers found in blood work).

What's Expected of the Patient  

A clinical trial may require you to undergo procedures, testing, assessments, and questionnaires specific to the study protocol. This information is generally described in the informed consent documents that all study participants must review and agree to follow before starting the trial.

If you have any concerns or issues about any study information, you should discuss those with members of the research team or your healthcare provider.

Clinical Trial Finder

RA affects more than 1.36 million adults in the United States. However, very few people with RA are willing to participate in clinical trials. In addition, even if someone with RA wanted to participate, they would not know where to start.  

If you are interested in getting involved in a clinical trial, your rheumatologist and their office might have information about local research taking place or studies within their hospital institutions.  

You can also find information online through governmental health agencies and nonprofit organizations, such as:  

• American College of Rheumatology
• Arthritis Foundation
• Clincaltrials.gov
• Center Watch
• Mayo Clinic
  
• National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
• National Institutes of Health

Factors That Affect Participation

Joining a clinical trial is a big decision. Before signing on, it is important to be mindful of barriers that might affect your participation. Barriers that might affect trial participation include inconvenient study locations, transportation costs, lack of time, and funding issues.  

Inconvenience of Patient Location

Many people who want to participate in clinical trials may live far away from trial site locations. Trial participants may not have access to reliable transportation, are unable to drive, or may not have public transit options. That means trial participants need to rely on family members or others to get to appointments, which isn't always possible.

Transportation Costs

The cost of transportation might also deter people from being involved in clinical trials. Patients are responsible for gas and automobile costs, using a ride-sharing service, or public transit costs. Those costs can lead to missed appointments.

Additional costs trial participants might incur are those for childcare and taking time away from work.

Time Investment

A clinical trial requires a time commitment. Medical appointments can take up a lot of time, or you may need to travel to the site location several times or even have to stay in the hospital.

One 2018 study on clinical trial participation found that 49% of study participants expressed that participation in the clinical trial disrupted their daily routine.

Lack of Funding

Funding sources for clinical trials include pharmaceutical companies, university medical centers, nonprofit organizations, private donors, and government agencies. A research study may not be completed due to a lack of funding.

There has been a reduction in clinical trials funded by the National Institutes of Health. Reasons cited for the reduced number include budget constraints, cost increases, and factors that are not measurable.

Ask Your Healthcare Provider

If you are interested in participating in an RA clinical trial, talk to your rheumatologist or other healthcare provider. They can answer your questions and give you information about trials that might benefit you. They might also be familiar with a trial's potential benefits and risks.

If you join a clinical trial, your provider can continue to answer questions and explain or clarify the aspects of the trial that may not make sense to you.

Summary

Rheumatoid arthritis is a lifelong condition that requires lifetime treatment. Joining a clinical trial can give you access to new and potentially more effective medicines before they become available. It may also provide you with access to treatment that you generally would not be able to get.

While it is possible to experience side effects from treatments, trials are heavily monitored with the patient's safety and welfare in mind. The FDA works with researchers, healthcare providers, and a review board to ensure that health risks are reasonable compared to the research benefits.

A Word From Verywell

If you join a clinical trial and find you are unable to continue participating due to side effects, discomfort, and inconvenience, you can always quit the study.

In addition, trial coordinators generally require those study participants who experience challenges, such as an allergic reaction, severe side effects, or a health problem, to leave if the trial is too risky. A clinical trial might also end if too many study participants are experiencing adverse outcomes or if the study isn't accomplishing its goals.