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Holloway Summit

In 2021, AFTD Board member Kristin Holloway generously established the Holloway Family Fund at AFTD, making the Holloway Summit series possible. Each year the Summit will focus on a different topic that can accelerate FTD research.

First Annual Holloway Summit Focuses on Digital Assessment Tools for FTD

Holloway Summit Cover

May 18 - 20, 2022  |  Miami, FL

The phrase “digital assessment tools” refers to emerging technologies that allow researchers to use smartphones, wearable trackers, or other devices to remotely gather data, known as digital biomarkers or digital clinical outcome assessments from research participants.

Summit Co-chairs: Naomi Nevler, MD (University of Pennsylvania) and Jonathan Rohrer, MD (University College London and the Genetic Frontotemporal Dementia Initiative)

Summit Planning Co-leads: Penny Dacks, PhD (Senior Director of Scientific Initiatives) and Debra Niehoff, PhD (Director of Grants and Research)

Attendees: More than 50 leaders in FTD science, neurodegenerative disease research, and digital tool development

Attendees discussed-

  • The development of tools to assess FTD symptoms, evaluating cognition and behavior; speech and language; motor speech and swallowing; gait and posture; and facility in activities of daily living.
  • The potential digital assessment tools have to allow people living with FTD to participate in clinical trials from the comfort of their own homes. Eliminating the burden of having to travel to a research center both encourages greater clinical-trial participation and can help to increase diversity in such trials (by including people who live in rural communities, for example).
  • Ways to identify and address questions that need to be answered before digital assessment tools can reach their full potential. For example, the question of which digital biomarkers should be collected, and how they should be measured, were prominent topics of discussion.
  • The challenges involved in the process of validation by the U.S. Food and Drug Administration for digital measures to be viable in clinical trials, as well as the challenges of data management – how digital biomarkers are curated, managed, and privacy-protected.

For more information, read the ALZFORUM conference coverage here.