LBDA

LBD Researchers Confirm Need for Large-Scale Studies

An international panel of leaders in LBD research met recently to discuss research opportunities and challenges in the field of Lewy body dementias.

This conference, which was chaired by members of LBDA’s Scientific Advisory Council, Dr. James E. Galvin of New York University and Dr. Ian McKeith of University of Newcastle upon Tyne, included presentations of both published and unpublished data on the pathology, biomarkers, imaging and clinical research of dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).

Over the course of nearly three days of discussion, it became clear that barriers to large-scale research are among the biggest challenges for those who study the disease.

“Very few research centers can do large-scale studies in DLB; and the results of smaller studies aren’t strong enough to clearly answer many critical research questions,” said Angela Taylor, LBDA’s Director of Programs who attended the event at the Cold Spring Harbor Laboratory’s Banbury Center in Huntington, New York. “Additionally, smaller-scaled studies vary in which diagnostic tools and measurements of symptom presence (or severity) are used. The results can’t be combined for an ‘apples to apples’ comparison. This prevents many important questions about Lewy body dementias from being answered.”

Attendees discussed international and U.S.-based strategic efforts to advance research. Taylor presented on LBDA’s role in outreach, education and research.

There was broad consensus among attendees that investment is needed to create common research protocols for multi-site studies. In addition they endorsed the urgent need to build formalized networks of LBD research sites for broader collaboration in the U.S. and Europe.

This echoes the new research strategy (pdf) for Lewy body dementias that has been approved for inclusion in the National Alzheimer’s Plan (NAPA) (pdf). The highest priorities for LBD research in the NAPA plan for the next 1-3 years are as follows:

  • To initiate clinical trials for DLB and PDD that address key symptoms that affect patient function and the burden put on caregivers;
  • Establish longitudinal studies with common measures, culminating in autopsy studies to improve the accuracy of detection and diagnosis of DLB at the pre-dementia stage and to detect PD patients with a high risk of cognitive decline leading to PDD.

“The meeting also highlighted a growing capability of the scientific community to launch LBD clinical trials,” stated Taylor.

The event was intended to serve as a springboard for a newly announced International DLB Conference to be held Dec. 1-4, 2015 in Ft. Lauderdale, FL. Dr. Ian McKeith stated “The Banbury meeting established a platform of knowledge and opinion that will be invaluable in ensuring development and future expansion of the International DLB Consortium.”

Attendees of the meeting included nine members of LBDA’s Scientific Advisory Council, other leading researchers in dementia with Lewy bodies and Parkinson’s disease dementia, and representatives from the pharmaceutical and biotech industries.

The meeting was supported by Cold Spring Harbor Laboratory, a private, not-for-profit research and education institution at the forefront of molecular biology and genetics.