This year, May 19th was International Clinical Trials Day, which aims to help raise awareness of the important role clinical trials play in public health and medical progress. Despite how critical these trials are to finding therapies to cure, prevent and treat type 1 diabetes (T1D), many people have questions about how clinical trials work and whether they are eligible to participate. Here are seven important clinical trial facts to know and share.
1. Participation in clinical trials is critical for developing new therapies, but volunteers are lacking.
About 20,000 people are needed for T1D trials in the U.S., but researchers have reported a massive shortage of participants. More than 80 percent of clinical trials are delayed or fail because doctors cannot find enough people to take part.
2. The process for recruiting participants wasn’t always designed with user experience in mind.
JDRF believes that one reason for the participant gap is that information on clinical trials has not been easy to access. There have been databases, but they were not very easy for people with T1D to navigate – so potential participants would rarely find trials in their area. In fact, 85 percent of patients don’t know about clinical trials and therefore, never have the opportunity to take part.
3. Your doctor may not tell you about clinical trials.
Doctors are focused on helping people with the therapies that are available today, so clinical trials may not be top of mind for them. If you’re interested in clinical trials, you might want to look into your options and bring information to your next appointment, so you can discuss a particular trial with your doctor.
4. You need to meet eligibility requirements.
Whether you can take part in a trial may depend on your age, sex, other conditions you have, what types of insulin you use, when you were diagnosed and what complications you are experiencing. To know if the trial is a fit for you, you should know what kind of patients researchers are looking for.
5. There’s an easy-to-use tool on the JDRF website that can help match you with a trial.
In 2016, JDRF unveiled a new tool called Clinical Trials Connection that asks users some simple questions about themselves before matching them with trials for which they are eligible. Clinical Trials Connection uses your city, distance you’re willing to travel and other characteristics to narrow down dozens of trials to the ones in which you may be interested.
6. Important T1D clinical trials need your support through advocacy.
The Special Diabetes Program (SDP) is a critical program that provides $150 million annually for T1D research funded by the National Institutes of Health (NIH), the country’s premier medical research agency. The SDP is currently set to expire on September 30, 2017. Renewal of the SDP is one of JDRF’s top legislative priorities, to ensure that promising SDP-funded research can continue delivering results toward better treatments, therapies and ultimately a cure for T1D.
You can support renewal of the SDP by sharing JDRF’s Advocacy page and by signing up to be an Advocate.
7. Participating is not always easy, but many feel the payoff is worth it.
Participating in clinical trials can be extremely rewarding, but it’s also important to ask questions about the trial protocols and time requirement before signing up. For example: Will you need to travel to a research site? Are you comfortable with having an intravenous drip if that’s part of the study? Many volunteers, however, would say that the time and effort are well worth it, knowing that they have contributed to future T1D therapies:
“My younger son is now 19 and has been in a clinical trial for more than six years,” says Derek Rapp, President and CEO of JDRF. “He has found that participation was sometimes tedious, but it was also empowering. Every patient will have a different experience, but most seem glad to have the chance to help themselves and others.”
“I was a lot more in tune with my overall health while I was in the trial,” says Phyllis Kaplan, who participated in a clinical trial in Boston. “It’s great to see so much in motion, and to know how many people are focused on working to bring better diabetes management tools to market. We’ve come a long way in the 42 years I’ve had T1D, and it’s exciting to see what happens next.”