AD-Related Dementias Summit 2016: Progress, Aims, Dollars

Frontotemporal Degeneration was included in the discussion at the Alzheimer’s Disease-Related Dementias (ADRD) 2016 summit held March 29 to 30 at the National Institutes of Health (NIH) in Bethesda, Maryland.

The meeting itself followed six months of preparation, during which about 80 leading scientists, physicians, and administrators were convened around topics and disease areas. At the summit, the scientists in these working groups, plus invited experts from several European countries, reported on progress the field had made since 2013.

Here are a couple of excerpts as they pertain to FTD. See page 2 of the ALZFORUM report for more about the research into FTD.

“Because non-AD dementias tend to languish outside the Alzheimer’s spotlight, they can benefit most strongly from the work of dedicated non-governmental organizations, said Susan Dickinson of the Association for Frontotemporal Degeneration (AFTD), Radnor, Pennsylvania. For one thing, these groups draw patients and caregivers into research through education and registries, Dickinson said. “We bring them to the table, get their buy-in on research programs, and get them to inform [study] design,” she told the audience. AFTD is building an FTD Disorders Registry to collect data from patients and caregivers who want to participate in research to accelerate recruitment for clinical trials. AFTD also conducts research. For example, a soon-to-be-published economic burden study estimates the cost FTD imposes on families and society at large. Having these numbers will strengthen researchers’ FTD grant applications, Dickinson said. She particularly emphasized that NGOs should not compete but collaborate in their shared interests, which has not always been the case among dementia philanthropies.”

“Following a string of genetic discoveries, scientists are now in the midst of an explosion of work to discover the mechanisms of disease in this especially diverse group of disorders. “We are understanding the pathways involved in more detail than ever before,” said David Holtzman, Washington University in St. Louis. Many researchers agreed broadly that progress in the molecular biology of FTD is so rapid they are having trouble keeping up.”