Novel cancer therapies take, on average, 17 years to get from the bench in the lab to a patient’s bedside — for a number of reasons.
Only 5 to 10 percent of eligible adults have ever enrolled in a clinical trial.
In an effort to clear at least one of those major hurdles, which is letting patients know what clinical trials are available and getting them signed up, a new app is in its final stages of development that should take care of it all.
Here’s how it works: A patient types in the name of a disease, disorder or the kind of clinical trial he or she is interested in and voila — the options appear.
“When patients find a study that interests them, they just push a button and their contact information is sent to the study coordinator, who can contact them to begin recruitment,” said Dr. Peter Elkin, professor and chair of the Department of Biomedical Informatics at the University of Buffalo.
Elkins and a team at UB developed the app through a Clinical and Translational Science Award (CTSA). The free app, Participants in Science (PartSci), isn’t on the market yet, but the goal is to have it fully operational by the end of summer, Elkins told LifeZette.
“This app has the potential to significantly speed enrollment in clinical trials and the translation of basic research into new therapies to benefit our patients,” said Elkin. “By allowing patients to essentially self-recruit, this app empowers people to more actively participate in improving their health and the health of their communities.”
Recruitment for clinical trials has never been easy, and that fact has significantly stalled both the amount of research being done and the speed with which new treatments have come onto the market. Only 5 to 10 percent of eligible adults have ever enrolled in a clinical trial — and only about 5 percent of patients who showed initial interest actually completed a trial.
PartSci’s creators said this is one of the reasons the app will initially pull up clinical trials closest to a patient’s home or location.
“It could work any place in the country, but when you use it in Buffalo, they’ll tell you about trials in the local region. If you use it in Boston, it’ll tell you about Boston trials; in LA – LA trials. If you live in Buffalo, you’re not going to want to travel to LA to be part of a trial,” said Elkin.
“If you have a rare cancer and live in rural Iowa, you don’t want to be limited to the clinical trials near you,” said one patient advocate.
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Elkin said studies typically don’t recruit people who live far away.
Meg Gaines is glad to hear it’s an option. Many years ago, this law professor from Madison, Wisconsin, was told there was nothing more doctors could do for her in her battle with ovarian cancer. She credits her survival to novel treatments and clinical trials that were only accessible halfway across the country.
She has since gone on to establish and lead the Center for Patient Partnerships at the University of Wisconsin-Madison. The center trains graduate and professional students in consumer-centered patient advocacy. Students from law, medicine, pharmacy, social work, public and population health, and public affairs work with clients facing serious chronic or life-threatening illness. They collect information on novel treatments and clinical trials and work with patients who want to consider every possible option and location, if it will help.
“If you have a rare cancer and live in rural Iowa, you don’t want to be limited to the clinical trials near you — you want to know what’s going on at Bethesda or M.D. Anderson, Memorial Sloan Kettering or the University of Wisconsin, if it’ll help you,” Gaines told LifeZette.
While glad to hear the app could help make clinical trials more accessible, she noted that people still need a lot of help when diagnosed with a life-threatening illness.
“The average person often feels as if they’re the only person ever diagnosed with whatever it is. They need navigators. They need someone who can translate and explain it to them — and it’s typically not physicians,” said Gaines.
It’s difficult to build an online tool for a moving target, she said, and right now things are changing fast in the world of cancer research and treatment. Things are changing very rapidly, she noted.
“With the advent of gene specific treatments, immunotherapies and those kind of things, there won’t be people anymore with lung cancer. There will be people with K27 positive whatever … and the treatments will address the genetics and other irregularities versus ‘this is what we use in the breast.'”
For patients seeking information on available clinical trials, the National Cancer Institute keeps a database of all registered clinical trials nationwide on its website. More than 54,000 cancer clinical trials are ongoing currently, according to clinicaltrials.gov.
Other similar programs are also in the works. Froedtert Hospital & the Medical College of Wisconsin recently announced an agreement with IBM on a new high-speed computer program called Watson. The program matches cancer patients with the most appropriate clinical trials — all in a matter of minutes. Froedert is one of 14 hospitals working to implement Watson, fiercemedicine.com reported.
The team at UB also has a second app under development. It will allow clinicians to more easily recruit patients into their trials by allowing them to search for local trials that meet their patients’ needs. One touch will refer them to the appropriate study coordinator.