Why Is It Hard to Participate in a Clinical Trial for Rheumatoid Arthritis?
When Health Union conducted their 8th Annual RA In America Survey, they asked people about clinical trial participation. Interestingly, 49 percent of respondents said they would be interested in participating in a clinical trial, but 90 percent never had.
This begs the question: what is preventing more people with RA from participating in trials? The question led me to the internet where I found some interesting articles that I’ll include below. But, my research efforts left me with more questions than answers, especially since I'm in the 90 percent group: I've never been in a clinical trial.
Challenges with clinical trial recruitment
When I first started looking into this question, I found out that patient recruitment is one of the top issues with clinical trials. Not finding enough people for a study often delays or even stops trials from happening altogether.1
For a variety of reasons, many doctors are not interested in participating in research (extra paperwork, time commitment, and the above recruitment issues), so there are few doctors and centers that recruit most patients for trials.2 This led me to realize that many people, especially people like me who live in rural areas, maybe too far away geographically to make participation in a trial work.
Strict inclusion criteria
If 49 percent of patients would be interested, then why would it be hard to find subjects? Further research told me that recruitment guidelines are very strict and most patients don’t qualify, at least for biologic medicine trials.
A lot of RA patients don't qualify for these trials
A study published in the journal Arthritis Care and Research in 2017 examined two patient databases - approximately 3,000 RA patients - and then compared them to inclusion/exclusion criteria of 30 clinical trials for RA biologic medicines.
They found that the vast majority of these patients (96.3 percent in one group and 92.4 percent in the other) didn’t qualify for any of these clinical trials.3 This is disturbing on another level. Clinical decisions being made from less than ten percent of the patient population should raise eyebrows, but that’s a topic for another day!
How to get involved with clinical trials
So far, we’ve found out that it is hard to get into a clinical trial and that it is hard finding people for clinical trials. So, what is one to do if they want to get into a trial? When I’ve been interested in participating in a trial in the past, I’ve gone to the site Clinicaltrials.gov, a national database of clinical trials maintained by the National Library of Medicine at the NIH.
There, you will find hundreds of studies you can weed through to see if any would be of interest to you. I’d also ask my doctor and local hospital or hospitals to see if there are any clinical trials close by. You may get lucky and, if not, at least your doctor will have you at the top of his/her mind if anything comes up later.
What was your experience?
I’d like to hear from people who have been in a trial. How did you get in? What was your experience? Would you do it again? Whose idea was it - yours, or your doctors? Do you have any suggestions for those of us who are interested in learning about getting into a trial? I’m looking forward to hearing from you!
The 8th Annual RA In America survey was conducted online from April 6 to June 25, 2020. A total of 3,511 people completed the survey.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?