An interactive telephone- and Web-based service now lets Alzheimer's patients, caregivers, and their physicians connect more easily with ongoing clinical trials.
The service – Alzheimer's Association TrialMatch – has the potential to greatly enrich the research into more effective treatment options and the ultimate goal of an Alzheimer's cure, William Thies, Ph.D., chief medical officer of the Alzheimer's Association, said at a press briefing.
“Alzheimer's disease is clearly the No. 1 health challenge of the 21st century, and research is the only way to solve this problem,” Dr. Thies said at the meeting in Honolulu. “If patients are not enrolling in trials, there can be no advances in diagnosis, treatment, and prevention, making the lack of study participants a significant health issue. TrialMatch provides a first-of-its-kind service in Alzheimer's by delivering a user-friendly and individualized guide to clinical trials for people with Alzheimer's, their health care professionals, caregivers, and healthy volunteers.”
There are about 150 clinical studies for Alzheimer's and dementia ongoing. Unfortunately, not enough patients volunteer for them – a problem that slows recruiting and drags out the overall length of the trial, Dr. Reisa Sperling said in an interview.
“At the rate we have people signing up now, it takes 12–18 months just to complete enrollment for a study,” said Dr. Sperling, director of clinical research at the Memory Disorders Unit, Brigham and Women's Hospital, Boston. “Since each one of these trials lasts for 18–24 months, that means each one takes 3–4 years to get an answer. This is not doable with the current scale of research.” Currently, there are 10 drugs in large-scale clinical trials and another 20 in preclinical studies.
Even when patients do volunteer for trials, screening eliminates many possible candidates, she said. “For every patient we enroll, we typically need to screen three or four. TrialMatch will collect detailed information in a confidential way, online, and that will speed up the matching process considerably.”
Interested parties visit the TrialMatch Web site (www.alz.org/TrialMatch
At any time in the process, users can also call a toll-free number (800-272-3900) to speak with a volunteer who will walk them through the process. Specialists who are available 24 hours a day help to match individuals to clinical trials for which they are eligible, based on study inclusion/exclusion criteria, diagnosis, treatment history, and location. While they won't be able to recommend particular trials, they will be able to describe all the studies for which a user may be eligible.
One of TrialMatch's biggest benefits is education, Dr. Sperling said. “Patients need more information about what being in clinical trial requires, and physicians need to understand why it's important to take the time to direct patients into studies.”
The studies included on TrialMatch include large, industry-sponsored drug trials, natural history and imaging studies, federally funded trials, and smaller, investigator-initiated studies. All of them are important, Dr. Sperling noted. “We need to rapidly enroll for all these studies, even the smaller ones, which often form the basis for larger studies.”
She expressed the hope that accelerating recruitment will also speed up answers to the problem of Alzheimer's disease – a condition that threatens to overwhelm the national health care scene in the next 50 years. By the middle of this century, there could be 1 million new cases diagnosed each year in the United States alone.
“I'd like to take a page from the success some of my oncology colleagues have seen,” Dr. Sperling said. “For example, as soon as 80% of children with certain pediatric tumors began enrolling in research, there were huge leaps forward in finding treatment. Finding answers is directly proportional to research.”
Entering a clinical trial also is an important way for both physicians and patients to claim some power in a situation that can make them feel quite helpless, she added. “I hope this can change the landscape of thinking about what patients and doctors can do to be proactive about this disease. Instead of hiding from it, let's agree to fight it tooth and nail.”
Dr. Eric Tangalos, codirector of education for the Mayo Clinic Alzheimer's Disease Research Center in Rochester, Minn., agreed. “TrialMatch is a wonderful innovation and excellent opportunity for more patients and families to get involved with Alzheimer's research,” he said in an interview. “I want my patients and families to run toward a diagnosis rather than away from it. Moreover, people who volunteer for research studies tend to do better than people who do not volunteer.
“There is not only the direct benefit of being engaged but [also] a social and societal advantage that plays out positively for the volunteer.”