In an effort to help fulfill an urgent need for clinical trials patients, the
Alzheimer’s Association has spent $1.2 million to create TrialMatch. Launched in mid-July, the phone and online system aims to match Alzheimer’s patients and their caregivers to ongoing clinical trials.
To date, it is one of only two formal disease-specific efforts to recruit patients (the other is BreastCancerTrials.org, launched last year).
TrialMatch works like this: Patients or their caregivers fill out a short questionnaire online, which then puts them into one of two tracks: caregiver or patient. The service then provides them a list of nearby trials
that would be appropriate for them, along with phone numbers for sites. They can also call TrialMatch for the information. In addition, the system includes a track for physicians seeking trial information for their patients.
Bill Thies, chief medical and scientific officer of the Alzheimer’s Association, came up with the idea, explaining that the trials in the system are culled from ClinicalTrials.gov. Before they are matched, however, the sites are called to make sure each study is still ongoing and each site is active. The association has outsourced this work to New York-based Emerging Med, which provides a similar service for a consortium of oncology sites in Florida. Thus far, there are about 100 Alzheimer’s trials in the TrialMatch system.
Thies said the association launched a pilot for the system last year and quickly saw that before the actual service launched, much more physician education was needed. The association’s surveys revealed that doctors didn’t know much about how clinical research worked and had no idea how to find trials for their patients. “We’re trying to eliminate that barrier as much as we can,” he said.
The association is starting by promoting TrialMatch through physician organizations such as the American Academy of Family Physicians and the American Osteopathic Association, offering continuing medical education sessions at their conferences.
The key: focusing on doctors’ dissatisfaction with what’s currently available for their Alzheimer’s patients.
“One of the frustrations the family physicians have now is that there isn’t much they can do for their patients,” said Thies, explaining that there are only four medicines for Alzheimer’s, all of which fall into the category of symptomatic drugs. They improve thinking processes but they don’t affect the underlying causes of the disease, so the disease continues its progression. The next generation of drugs currently in trials, however, is aimed at slowing the rate of function loss, he explained.
The association is trying to impart to physicians how important it is to get involved in research by helping with recruiting. “It’s perfectly clear that we can speed the rate of development of these new therapies by getting physicians to understand how important it is to find volunteers for trials, and how important those trials are to future patients,” Thies said.
Recruiting for these trials is tough, Thies explained. Only 1% of all eligible people with chronic diseases volunteer for trials. Add to that the extended limitations of Alzheimer’s and the number sinks even lower. “People with Alzheimer’s are usually older, so there are limitations on mobility. Transportation is tough as it often depends on another person, and some may become overwhelmed with all it takes to participate in a trial,” he said. In addition, the progression of the disease is slow, so a drug’s affect on symptoms can take a long time to be detected.
For TrialMatch there has been early success. Since June, when the system went live but hadn’t officially launched or been promoted, about 80 patients accessed it and about 20 went on to connect with the system via phone. Thies said the association won’t be able to keep metrics about how many patients eventually enroll in trials, as it is not actually connected to any of the studies. But after a year, the association will do a sampling of sites to get a sense of the system’s effectiveness.