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National Initiative Focuses on New Treatments for Lewy Body Dementia

Wednesday, April 18, 2018

URMC joins national network focused on research, care for Lewy Body Dementia

 The University of Rochester Medical Center (URMC) has been selected to participate in a national network created to develop new ways to diagnose and treat Lewy Body Dementia (LBD). The new initiative, which is being organized by the Lewy Body Dementia Association, will seek to raise awareness and advance research for this complex disorder.

“Lewy Body Dementia is a challenging, multifaceted disease and research to find new diagnostic tools and treatments is still in its infancy,” said URMC neurologist Irene Richard, M.D., who will serve as director of the URMC Lewy Body Dementia Association Research Center of Excellence.   “This new network of will create an infrastructure of clinician researchers  who understand the disease, are able to identify patients to participate in research, and have experience participating in multi-site clinical trials.”

LBD is a progressive brain disorder marked by abnormal protein deposits – called Lewy Bodies – in areas of the brain important for behavior, cognition, and motor control. This complex disease gives rise to a range of symptoms, including cognitive impairment, sleep disturbances, hallucinations, difficulty with blood pressure regulation, and problems with movement and balance. Individuals with the disease will often experience marked fluctuations in their levels of alertness and clarity of thought.

The diagnosis of LBD can be challenging and is frequently mistaken for Parkinson’s disease or Alzheimer’s dementia. Once identified, the disease is difficult to treat as many of the drugs available to address specific symptoms – such as those enhancing dopamine for movement and anti-psychotic drugs for hallucinations and behavioral problems – have side effects that can make other features of the disease worse. 

The LBDA Clinical Research Centers of Excellence program, which consists of 33 leading academic medical centers, will provide a centralized, coordinated research resource to support government, industry, and foundation-supported clinical studies investigating new ways to identify and treat the disease. 

The program will also serve as an educational resource for providers to improve care for patients and their families.  The centers were chosen for their clinical expertise in LBD and experience conducting clinical research trials in related conditions.   The URMC center will consist of the specialists in the Department of Neurology’s Movement Disorders division. 

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