When I worked in the nonprofit sector, I often was asked, "Aside from giving money to a cause, how can I help?" (I heard this particularly in relation to health issues, where it often just seems like you're sending money off into Neverland, wondering what research it's actually funding.)
Yesterday the Alzheimer's Association announced the launch of TrialMatch, a Web- and phone-based program for hooking up people who have been diagnosed with Alzheimer's disease (and their families and caregivers) with clinical trial information.
More than 100 studies are available, but without volunteers, the research possibilities are limited.
Here's the release with all the details:
Honolulu, Hawaii, July 12, 2010 — The Alzheimer's Association announced today the launch of Alzheimer's Association TrialMatch™, a confidential and free interactive tool that provides comprehensive clinical trial information and an individualized trial matching service for people with Alzheimer's disease and related dementias. The Internet (www.alz.org/trialmatch) and phone-based (800-272-3900) service debuted during the Alzheimer's Association International Conference on Alzheimer's Disease 2010 (AAICAD 2010) in Honolulu, HI.
There are as many as 5.3 million Americans living with the Alzheimer's and every 70 seconds someone in America develops the disease, according to the Association's 2010 Alzheimer's Disease Facts and Figures. This year, there will be one half million new cases of Alzheimer's; in 2050, there will be nearly a million new cases annually.
"Alzheimer's disease is clearly the #1 public health challenge of the 21st century and research is the only way to solve this problem," said William Thies, PhD, Chief Medical and Scientific Officer at the Alzheimer's Association.
Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of Alzheimer's treatments, perhaps second only to lack of funding.
"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 public health issue," Thies said. "Alzheimer's Association 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 healthcare professionals, caregivers and healthy volunteers."
More than 100 clinical studies in Alzheimer's and dementia are currently taking place and dozens more experimental compounds are moving from the laboratory to clinical testing. For people with Alzheimer's and their caregivers, clinical trials present an opportunity to play a more active role in their own treatment — ultimately contributing to scientific discovery and benefiting future generations.
About Alzheimer's Association TrialMatch
Alzheimer's Association TrialMatch is designed to be easy to use for people with Alzheimer's, with web and phone support, specially trained staff, and tools developed with input from people with Alzheimer's.
The strength of this Web- and national 800 line-based service is that Alzheimer's Association TrialMatch contains a comprehensive, constantly updated database of institutional review board-approved Alzheimer's, mild cognitive impairment and other dementia trials taking place across the U.S. Specialists at the Alzheimer's Association's national Helpline — available 24-hours a day — assist in the process of matching individuals to clinical trials for which they are eligible based on study inclusion/exclusion criteria, diagnosis, treatment history and location.
By Association policy, telephone specialists will not recommend any particular clinical trial, but will describe all studies for which the person is eligible. They will answer questions about the trial process and connect individuals with trial sites based on their unique profile. Patients and caregivers will be encouraged to share their trial matches with their healthcare professionals to help decide whether a clinical trial is appropriate.
"We're looking to physicians to play a leadership role in referring their patients to Alzheimer's clinical trials and to Alzheimer's Association TrialMatch," said Marilyn Albert, PhD, Professor of Neurology at Johns Hopkins and Director of their Division of Cognitive Neuroscience. "As healthcare professionals, there is more we can do to help our Alzheimer's patients post-diagnosis by offering access to potential cutting-edge research and treatments being tested."
Not eligible for the trials, but still want to help the cause? Join our local chapter's Memory Walk on Sept. 18. Learn more by clicking here.
And for more information about the Alzheimer's Association, click here.