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Vol. LXV, No. 16
August 2, 2013

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Affects 36 Million People Worldwide
NINDS Sponsors Workshop on Alzheimer’s Disease-Related Dementias

Alzheimer’s disease accounts for most cases of dementia, however, about a third of all cases are caused by other, lesser known brain diseases. In fact, most people diagnosed with Alzheimer’s do not have a pure form of the disease—instead they have a mix of Alzheimer’s and other disorders. When all types of dementia are added together, as many as 36 million people in the world are living with the disorder; its burden is growing as our population ages.

How best to pursue scientific solutions to this daunting public health problem? NINDS recently sponsored a 2-day workshop, “Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities,” to gather ideas.

opportunities for public comments. NINDS deputy director Dr. Walter Koroshetz welcomes attendees.

Approximately 500 people attended the ADRD workshop, which included presentations, panel discussions and (at left) opportunities for public comments. At right, NINDS deputy director Dr. Walter Koroshetz welcomes attendees.

Photos: Bill Branson

Held at Natcher Conference Center, the meeting brought together scientists focused on dementia research as well as other experts from academia, industry and non-profit groups and patient caregivers to help guide scientific research and set priorities on Alzheimer’s disease-related dementias (ADRD) for the next 5 to 10 years. ADRD—specifically defined for the conference as frontotemporal, Lewy body, mixed and vascular dementias—are debilitating conditions that impair memory, thought processes and functioning and occur primarily in older adults.

“We need to know what research paths will lead to major scientific advances for people who are facing dementia,” said NINDS deputy director Dr. Walter Koroshetz in welcoming remarks. “Are there fruitful research directions that we have not yet thought about? Without a conference like this, those new pursuits do not happen except by serendipity. We would like to attack the burden of illness due to dementia with a well-considered plan, not relying solely on serendipity.”

Dr. Ronald Petersen of the Mayo Clinic, chair of the Advisory Council on Alzheimer’s Research, Care and Services, gave an overview of the National Alzheimer’s Project Act (NAPA). The 2011 NAPA law led to the National Plan to Address Alzheimer’s Disease. As part of that plan, NIA last year held the “Alzheimer’s Disease Research Summit,” which created a multidisciplinary research agenda to accelerate development of AD therapies.

The national plan also called for NIH to hold a conference in 2013 to develop research priorities that will pave the way for treatments for dementias related to AD. NINDS’s ADRD workshop—organized in collaboration with NIA, the Alliance for Aging Research, the Alzheimer’s Association, the Association for Frontotemporal Degeneration and USAgainst Alzheimer’s—answered that call.

Workshop scientific chair Dr. Thomas Montine (l) with workshop lead Dr. Roderick Corriveau

Workshop scientific chair Dr. Thomas Montine (l) with workshop lead Dr. Roderick Corriveau

For months leading up to the meeting, groups of top dementia researchers, physicians and other experts worked to develop core recommendations. The ADRD workshop’s purpose was to review, tweak and, perhaps most importantly, prioritize the recommendations.

“If everything is a top priority, then nothing is a top priority,” said Dr. Thomas Montine of the University of Washington, who served as scientific chair of the workshop. “We need to stay focused on a short list of highest priorities to be sure that we remain actionable.”

About 500 people attended the meeting, which featured 65 speakers and was divided into 5 sessions on major research areas: ADRD and Multiple Etiology Dementias, Lewy Body Dementias, Frontotemporal Dementia and AD-Related Tauopathies, Vascular Contributions to ADRD and Health Disparities in ADRD. At the end, chairs from each session fielded questions and collected feedback on the recommendations.

Several key ideas were shared:

  • Increase knowledge of disease mechanisms with a special emphasis on improving disease models to learn more about the fundamental biology of ADRD
  • Aid preclinical development of new treatments
  • Improve diagnostics for all types of dementia

Another theme was education—to help primary care physicians identify ADRD earlier, and more effectively treat Alzheimer’s and ADRD, as well as increase awareness of the disorders among the public.

The meeting also highlighted the recent momentum boost to dementia research via NIH director Dr. Francis Collins’ commitment of an additional $40 million toward NIH Alzheimer’s research in 2013, as well as the boost to neuroscience research in general through the new BRAIN Initiative.

Recommendations from the workshop will be presented to NINDS’s advisory council in September and then to the NAPA council in October.

“I cannot overemphasize how important these discussions are to NIH,” concluded Koroshetz. “Our success in decreasing the burden of illness due to ADRDs is highly dependent upon this thoughtful scientific and stakeholder input.”

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