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."
Alzheimer's Association TrialMatch can be accessed at www.alz.org/trialmatch or by calling toll-free, (800) 272-3900.
The technology and platform for Alzheimer's Association TrialMatch is provided by EmergingMed.
We’ve always known that Alzheimer’s disease is expensive. It costs families precious time with their loved ones. It costs people their lives.
But the costs to Medicare and Medicaid are also devastating. This morning, we released Changing the Trajectory of Alzheimer’s Disease and Other Dementias: A National Imperative. a report that examines how in the absence of disease-modifying treatments, the cumulative costs of care for people with Alzheimer’s and other dementias from 2010 to 2050 will exceed $20 trillion. ($20 trillion dollars is enough to pay off the entire U.S. federal debt and send a check to every man, woman and child in America with additional money left over .)
The report also reveals that the number of Americans age 65 and older who have Alzheimer’s or another form of dementia will increase from 5.1 million to 13.5 million by mid-century. Our nation is woefully unprepared for this accelerating epidemic.
That’s why we continue to call on Congress to pass the National Alzheimer’s Project Act (S.3036/H.R. 4689). A coordinated, strategic, national approach is the only way to confront this problem. Go to http://www.alz.org/trajectory to get involved.
While many other countries have already developed plans, the United States is lagging behind. Australia, Canada, Cyprus, England, France, Germany, Netherlands, Norway, South Korea and Sweden all have national plans. It’s time for us to catch up.
What do Australia, South Korea and the Netherlands have in common? They are among the growing number of countries that have realized Alzheimer’s disease will overwhelm their healthcare systems if left unchecked – and they are all preparing to do something about it. Each of these countries is developing a national plan to fight the disease. So far, the United States has not; it’s time to change that.
Three weeks ago, our congressional allies introduced the National Alzheimer’s Project Act in the House and Senate. Already we have 21 cosponsors in the House and 14 in the Senate. Support for this bill is the first step towards creating a national plan to solve the Alzheimer’s crisis.
The Alzheimer's Association will be working hard over the coming months to pass this important measure before the 111th Congress adjourns. We’ll be posting the latest news and information as we get it. Are your Members of Congress cosponsors? You can check here: http://bit.ly/a6fKZy.
Last night’s Candlelight Tribute Rally was incredible – it was a beautiful night and a powerful way to remember why we’re all here and get invigorated for what lies ahead. We heard personal stories from advocates Leslie Walker and Steve Hume and then a call to action by David Hyde Pierce. He truly brought out the VOICE of the crowd.
This morning we heard from veteran political strategist, author and educator Donna Brazile, who gave an overview of the political landscape in Washington right now. She also shared with us her own family's experience of caring for her grandmother after her Alzheimer's disease diagnosis.
This afternoon is filled with training sessions on the legislation Alzheimer's Association advocates will be lobbying for on Capitol Hill this week as well as tips and tools for year-round advocacy. Everyone is pumped up to hit Capitol Hill tomorrow.
More than 11,000 people have lit a virtual candle to honor someone they love who has battles Alzheimer's. Please take a moment to join them online at http://alz.org/virtualrally.
Excitement started to build as advocates rolled into Washington, D.C. today for the Alzheimer's Association Action Summit. Advocates have come from as far away as Alaska, others from nearby Maryland. They all have one thing in common: they’re all passionate about making a difference in the fight against Alzheimer’s.
While working at registration today we heard story after story about the devastating affects of this disease.
We have also heard amazing stories of hope and determination.
A woman from California told me of her mother’s misdiagnosis and subsequent denial of Medicare coverage. This is her third trip to Washington for the Summit and she’ll keep coming back until Alzheimer's is eliminated.
Right now we’re all getting ready to head to the Lincoln Memorial for the Candlelight Tribute Rally. We have passed the 10,000 mark for our “Virtual Candlelight Rally” as well – if you haven’t, please go to http://www.alz.org/virtualrally and light your candle. If you’re in the D.C. area, please meet us at the Lincoln Memorial!
In honor of Black History Month, the Alzheimer's Association recognizes African-Americans who have helped lead the fight against Alzheimer's. These Champions have furthered research for prevention and a cure; made strides in care and support; and raised awareness of Alzheimer's disease.
Dr. Goldie Byrd, Ph.D.
Dr. Goldie Byrd is the Nathan F. Simms Endowed professor of biology at North Carolina A&T State University, where she served as chair of biology for six years. She is also an adjunct professor of genetics at Duke. Dr. Byrd partners with colleagues at the University of Miami, Vanderbilt and Columbia to understand the genetic epidemiology of Alzheimer’s disease in African-Americans. Dr. Byrd has also been published extensively and presented her findings on African-American incentives and barriers to research participation at the Alzheimer’s Association International Conference on Alzheimer’s Disease 2009 (ICAD) in Vienna, Austria.
In honor of Black History Month, the Alzheimer's Association recognizes African-Americans who have helped lead the fight against Alzheimer's. These Champions have furthered research for prevention and a cure; made strides in care and support; and raised awareness of Alzheimer's disease.
Warachal Faison, M.D.
Warachal Faison, M.D., is a geriatric psychiatrist currently serving as a medical director in Neuroscience Primary Care at Pfizer Inc. For more than 15 years, she has studied the impact of Alzheimer’s disease on the African-American community, including minority recruitment for clinical trials. Dr. Faison, a proponent of community education and active discussion, is participating in the upcoming Alzheimer’s Association Diversity Dialogue during the Alzheimer’s Action Summit in Washington, D.C. March 7-9.
On February 11, 2010, the Social Security Administration announced it will now include early-onset Alzheimer’s disease in its Compassionate Allowances initiative to help the number of early-onset or younger-onset individuals who are no longer able to maintain gainful employment because of their cognitive impairment.
While applicants would still have to meet other SSDI criteria and/or SSI criteria, under this initiative they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for Social Security Disability (SSDI) and Social Security Income (SSI) benefits. The inclusion of early-onset (or younger-onset) Alzheimer’s disease, streamlines the SSDI/SSI application process allowing individuals to receive faster payment of their Social Security benefits.
Since 2003, The Alzheimer’s Association has advocated on behalf of individuals with Early-Onset Alzheimer’s as they navigate the Social Security disability process. This decision is a major step forward for their families.
In honor of Black History Month, the Alzheimer's Association recognizes African-Americans who have helped lead the fight against Alzheimer's. These Champions have furthered research for prevention and a cure; made strides in care and support; and raised awareness of Alzheimer's disease.
Solomon Carter Fuller, MD
Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer's Champions. The grandson of a slave, Dr. Fuller worked along side Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor.
Each year, hundreds of Alzheimer advocates – people with the disease, caregivers, and family members – from across the nation come to Washington, DC to hone their advocacy skills and then share their perspectives, experiences, and recommendations in meetings with their elected representatives. A unique platform of information sharing and learning, the Alzheimer Action Summit truly represents the best of civic engagement in the American political process.
We are pleased to announce our agenda for 2010 includes remarks from veteran political strategist, author and educator Donna Brazile. In addition to gracing several national publications’ “most powerful lists,” Brazile is also the recipient of the Congressional Black Caucus Foundation’s highest award for political achievement. A syndicated columnist and political analyst, Brazile was the first African American woman to manage a presidential campaign in 2000 for then Vice President Al Gore. This seasoned politico, best-selling author and regular CNN and NPR contributor will offer attendees invaluable insights about grassroots advocacy from her extensive experience in local, state and national politics.
Please visit alz.org/summit for more information, and to register today.
Mike Splaine, Director of State Policy and Advocacy Programs, recently traveled to India to meet with the Alzheimer’s and Related Disorders Society of India. Mike shares some of his experiences about the trip below.
It is hard to imagine meeting the challenge of Alzheimer’s disease in a developing country with limited infrastructure. Alzheimer’s and Related Disorders Society of India (ARDSI) is doing just that. I had the privilege of joining our colleagues from ARDSI as guest faculty for their annual conference in Kolkata and then in Delhi for the final consultation meeting to design a national Alzheimer strategy for India.
The theme of the meetings was building dementia “solidarity”:
* Solidarity within the Alzheimer community that has slowly developed in India in the past 17 years of scattered local organizations across a sub continent.
* Solidarity between sectors of the community such as researchers, caregivers and hospitals.
* Solidarity to work together with other non-governmental organizations and government to craft a real strategic approach to the challenge of dementia.
India is huge—1.5 billion people (and 500 million cell phones), and diverse culturally, medically, and socially. It is the epicenter of the rapidly growing challenges of Alzheimer’s disease – by 2020 an estimated doubling of persons affected, to over 6 million. This reflects global trends. We estimate that 60% of persons with AD worldwide will live in a developing country by 2020.
I shared some of our U.S. story with state Alzheimer plans and also our tools and experience in building an approach to advocacy and public policy. Though India is a democratic nation like ours, political traditions and conventions are surprisingly different.
The local leaders were hospitable to a fault, friendly and – like Alzheimer advocates I have met all over this country – passionate and committed. That said, every time I got comfortable I was reminded of just how a different a place India is. For example only 2% of persons of 60 have any health insurance – and almost all of these have just hospital coverage and it is derived from their children putting them on a work based family plan!
The final product of these deliberations will be an India AD report to be released next fall, with facts, faces, promising practices and action recommendations. This will be a first from a developing nation. You can read more about ARDSI at http://ardsi.org.
Mike Splaine with P.G. Datta Ray of the Alzheimer’s and Related Disorders Society of India – Calcutta Chapter.
As 78 million American baby boomers age, the prevalence of Alzheimer's disease will skyrocket. Economically, it has the potential to bankrupt an already fragile health care system. Socially, we have yet to overcome much of the stigma associated with it. In terms of basic knowledge and research, Alzheimer's is progressive, it is fatal, and there is currently no cure for it.
Despite these sobering facts, great progress is being made in the discovery of Alzheimer's causes and treatments. This progress must continue. To ensure that critical research funding becomes and remains a priority, we must all raise awareness about this disease. We must hear from even more Alzheimer advocates, including people living with the disease, their friends and family, public servants, celebrities and the entertainment industry.
This year, HBO Documentary Films and First Lady of California Maria Shriver were on the forefront of this awareness effort with "The Alzheimer's Project." The Alzheimer's Association would like to applaud and congratulate all those involved in the creation of these films on winning two Creative Arts Emmy awards. "The Memory Loss Tapes," which shadows seven individuals living in various stages of Alzheimer's, won for Exceptional Merit in Nonfiction Filmmaking; and "Grandpa, Do You Know Who I Am? with Maria Shriver," which captures what it means to be a child or grandchild of someone with Alzheimer's, won for Outstanding Children's Nonfiction Program. Both of these films revealed the realities of Alzheimer's disease, sparking conversations in living rooms nationwide and at more than 110 Alzheimer's Association community screenings.
Shriver, who served as an executive producer on the series and is a passionate voice for her own father and all those living with the disease, deserves special recognition. In addition to "The Alzheimer's Project" and numerous other advocacy activities, Shriver has testified before Congress as a compelling witness of the physical, emotional and financial devastation of this disease. Shriver's presence at Alzheimer's Association events from candlelight vigils to galas is felt and appreciated by the 5.3 million Americans living with Alzheimer's and their 10 million caregivers.
Yesterday, September 21, 2009, was World Alzheimer's Day and the Alzheimer's Association would like to thank all Alzheimer's Champions committed to the fight against Alzheimer's. An American develops Alzheimer's every 70 seconds. Now is the time to follow the lead of Shriver and all of the partners in the HBO documentary by joining the cause at www.alz.org.
The following is the story of an actual Tailgate to Tackle Alzheimer's event, which raised money to support the Alzheimer's Association.
Wow, what a game. I knew that watching my favorite college football team was going to be a blast but luckily we were able to also turn it into something good. This past fall we hosted a Tailgate to Tackle Alzheimer’s event before and after our game. We combined our usual gathering of friends and family with a chance to take action against Alzheimer’s. We were able to collect donations, register advocates and share the importance of bringing awareness about this devastating disease. It was easy. We received the supplies needed from the association, combined it with our own purple party favors and created an environment for having fun all while benefiting a great cause. So step up, take action and join me again this fall as we Tailgate to Tackle Alzheimer’s. I look forward to seeing your event at your local parking lot this fall.
PTSD ASSOCIATED WITH HIGHER ALZHEIMER’S/DEMENTIA RISK; MODERATE ALCOHOL CONSUMPTION MAY LOWER IT
PTSD ASSOCIATED WITH HIGHER ALZHEIMER’S/DEMENTIA RISK; MODERATE ALCOHOL CONSUMPTION MAY LOWER IT
Also, Survey Shows Adults Don’t Know Heart Risk & Alzheimer’s Risk Are Related
Vienna, July 13, 2009 – Though discoveries about Alzheimer’s disease risk factors are often in the news, adults do not know about the relationship between Alzheimer’s disease risk and heart health, nor that physical activity can be protective against dementia, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Two additional studies reported at ICAD 2009 show higher Alzheimer’s risk in veterans with post-traumatic stress disorder (PTSD), and lower Alzheimer’s risk among adults who consume moderate amounts of alcohol.
“Your brain plays a critical role in almost everything you do: thinking, feeling, remembering, working, and playing – even sleeping,” said Maria Carrillo, PhD, Director of Medical & Scientific Relations at the Alzheimer’s Association. “The good news is that we now know there’s a lot you can do to help keep your brain healthier as you age. These steps might also reduce your risk of developing Alzheimer’s disease or another dementia.”
“There’s a strong and credible association between heart health and brain health. If people learn about and do some simple lifestyle modifications, such as being more physically active and eating a brain healthy diet, it could have an enormous impact on our nation's public health and the cost of healthcare,” Carrillo added.
The studies reported at ICAD 2009 were: -- Colleen Jackson, et al – Dementia literacy: Public understanding of known risk factors. -- Kristine Yaffe, et al -- Post-traumatic stress disorder and risk of dementia among U.S. veterans. -- Kaycee M Sink, et al - Moderate alcohol intake is associated with lower dementia incidence: results from the Ginkgo Evaluation of Memory Study (GEMS).
Vienna, July 12, 2009 – A doctor’s positive attitude to Alzheimer’s diagnosis and their trusting, personal relationships with local dementia support service providers are powerful enablers for early diagnosis of Alzheimer’s, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Current data suggest that less than 35 percent of people with Alzheimer’s or other dementias have a diagnosis in their medical record. While there is currently no cure for Alzheimer’s, early detection is critical to ensuring that people have the power to plan their own healthcare and future, according to the Alzheimer’s Association.
“Being diagnosed early is vital to receiving the best help and care possible, living one’s life to the fullest, and capitalizing on opportunities such as participating in clinical studies,” said William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer’s Association.
Dr. Nerida Paterson, Senior Lecturer in the Discipline of General Practice at the University of Newcastle, Australia, and colleagues are interviewing more than 100 general practitioners (GPs) from four Australian research sites. At ICAD 2009, Paterson reported an interim analysis including interviews with 25 GPs.
The most cited enabler to early Alzheimer’s diagnosis is a doctor’s positive attitude to the diagnosis and treatment of dementia. Most of the GPs reported that referral to local services for planning, education, and support is an important part of disease management. Additional factors that encourage early Alzheimer’s diagnosis include: support from relatives and caregivers, belief in the patient’s right to know, and the desire of GPs to be honest and open with their patients.
The studies reported at ICAD 2009 were: -- Nerida E. Paterson, et al - Early diagnosis of dementia in primary care in Australia: A qualitative study into the barriers and enablers. -- Nerida E. Paterson, et al - The barriers to the early diagnosis of dementia and diagnostic disclosure in primary care.
The 2009 Alzheimer’s Association International Conference on Alzheimer's Disease (ICAD 2009) brings together more than 3,000 researchers from 70 countries to share groundbreaking research and information on the cause, diagnosis, treatment and prevention of Alzheimer’s disease and related disorders. ICAD 2009 will be held in Vienna, Austria at Messe Wien Exhibition and Congress Center from July 11–16.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit alz.org.
- Overcoming the Biggest Obstacle to Improving Alzheimer’s Treatments -
Vienna, July 12, 2009 – Partnering with local physicians, working with local clinics, and conducting educational seminars and health fairs were found to be the most effective tools in recruiting people for Alzheimer’s clinical studies, according to new research reported today at the Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD 2009) in Vienna.
Surprisingly, patient registries and Internet recruiting were found to be much less successful recruitment strategies, according to staff at the U.S. Alzheimer’s Disease Centers (ADCs). The National Institute on Aging (NIA) funds 30 ADCs at major medical institutions across the nation.
“Second only to inadequate funding, recruiting participants for clinical studies is the single greatest barrier to developing better treatments for Alzheimer's disease,” according to William Thies, PhD, Chief Medical & Scientific Officer at the Alzheimer’s Association. “These studies give us clear information – from people who are conducting large scale clinical trials now – on how we may recruit participants better and faster in the future.”
In another study looking specifically at recruiting African Americans for Alzheimer’s genetics studies, researchers found that having a relative with the disease, use of minority study personnel, and monetary compensation were the most powerful incentives for participation in research.
The studies reported at ICAD 2009 were: -- Tamara S. Markgraf, et al - Recruiting for Alzheimer’s disease Research: A systematic review of recruitment techniques and challenges among NIH funded ADRCs. -- Goldie S. Byrd, et al - Ascertaining Older African Americans for Genetic Studies in Alzheimer’s Disease. -- Ulrika Akenine, et al - Why AD patients and caregivers participate in randomized clinical trials.
"I felt my wife was nagging me about my driving; in my view, there was nothing wrong with it. I agreed to a meeting with my doctor to discuss her complaints. He agreed with her; he told me not to drive.
To foil their view and show them how wrong they were, I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably.
After a Neuropsychometric test, I was diagnosed as having Alzheimer’s disease.
The test told them I had substantial visual peripheral perception deficiency. This meant that I would see things but they had no meaning. This explained why I was screwing up driving, why I was falling after tripping over things in plain sight. It explained why I bumped into closed windows and was clumsy as could be.
My tripping and falling shattered a 12- year-old hip replacement that required surgery that had me on my back homebound, unable to walk, for 2 months. The recovery was rough. That was price enough! I am now on my feet ready to live again.
Knowing about the source of my clumsiness has helped me and my family create a safer environment. It has also given me the opportunity to pursue creative, social and fun activities as much as I want, which is very important to me. I just let my wife drive!"
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research.
Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Alzheimer's Association National Office, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601-7633
Alzheimer's Association is a not-for-profit 501(c)(3) organization
|