Developing digital health technologies for frontotemporal degeneration

Naomi Nevler^{1

2}, Debra Niehoff³, Amanda M Gleixner³, Shana Dodge³, Adam P Vogel^{4

5}, Derek L Hill^{6

7}, Simon Ducharme⁸, Adam M Staffaroni⁹, Yana Yunusova¹⁰, Rhoda Au¹¹, Brian Macwhinney¹², Bonnie Wong¹³, Julia Parish-Morris^{14

15}, Andrew Geronimo¹⁶, Bryan J Hansen¹⁷, Zachary T Beattie¹⁸, Diane T Stephenson¹⁹, Adam L Boxer⁹, Penny Dacks³, Jonathan D Rohrer²⁰

Affiliations

¹ Frontotemporal Degeneration Center, Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
² Digital Science Lab, Abbvie Inc., North Chicago, Illinois, USA.
³ The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
⁴ School of Health Sciences, The University of Melbourne, Parkville, Victoria, Australia.
⁵ Redenlab Inc., Melbourne, Victoria, Australia.
⁶ Medical Physics and Biomedical Engineering, University College London, London, UK.
⁷ Panoramic Digital Health, Grenoble, France.
⁸ Department of Psychiatry, Douglas Mental Health University Institute and Montreal Neurological Institute, McGill University, Montreal, Quebec, Canada.
⁹ Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
¹⁰ Department of Speech-Language Pathology, Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
¹¹ Department of Anatomy and Neurobiology, Neurology, Medicine and Epidemiology, Boston University Chobanian & Avedisian School of Medicine and School of Public Health, Boston, Massachusetts, USA.
¹² Department of Psychology, 346 Baker Hall, Carnegie Mellon University, Pittsburgh, Pennsylvania, USA.
¹³ Massachusetts General Hospital Frontotemporal Disorders Unit, Harvard Medical School, Charlestown, Massachusetts, USA.
¹⁴ Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
¹⁵ Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁶ Departments of Neurology and Neurosurgery, Penn State College of Medicine, Hershey, Pennsylvania, USA.
¹⁷ Janssen Research & Development, LLC, a Johnson & Johnson company, Raritan, New Jersey, USA.
¹⁸ Oregon Center for Aging & Technology, Department of Neurology, Oregon Health & Science University, Portland, Oregon, USA.
¹⁹ Critical Path for Parkinson's Consortium- Critical Path Institute, Tucson, Arizona, USA.
²⁰ Dementia Research Centre, Department of Neurodegenerative Disease, Queen Square Institute of Neurology, University College London, Box 16, National Hospital for Neurology and Neurosurgery, London, UK.

PMID: 40285380
PMCID: PMC12032191
DOI: 10.1002/alz.70082

Review

Developing digital health technologies for frontotemporal degeneration

Naomi Nevler et al. Alzheimers Dement. 2025 Apr.

. 2025 Apr;21(4):e70082.

doi: 10.1002/alz.70082.

Authors

Affiliations

¹ Frontotemporal Degeneration Center, Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
² Digital Science Lab, Abbvie Inc., North Chicago, Illinois, USA.
³ The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
⁴ School of Health Sciences, The University of Melbourne, Parkville, Victoria, Australia.
⁵ Redenlab Inc., Melbourne, Victoria, Australia.
⁶ Medical Physics and Biomedical Engineering, University College London, London, UK.
⁷ Panoramic Digital Health, Grenoble, France.
⁸ Department of Psychiatry, Douglas Mental Health University Institute and Montreal Neurological Institute, McGill University, Montreal, Quebec, Canada.
⁹ Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
¹⁰ Department of Speech-Language Pathology, Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
¹¹ Department of Anatomy and Neurobiology, Neurology, Medicine and Epidemiology, Boston University Chobanian & Avedisian School of Medicine and School of Public Health, Boston, Massachusetts, USA.
¹² Department of Psychology, 346 Baker Hall, Carnegie Mellon University, Pittsburgh, Pennsylvania, USA.
¹³ Massachusetts General Hospital Frontotemporal Disorders Unit, Harvard Medical School, Charlestown, Massachusetts, USA.
¹⁴ Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
¹⁵ Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁶ Departments of Neurology and Neurosurgery, Penn State College of Medicine, Hershey, Pennsylvania, USA.
¹⁷ Janssen Research & Development, LLC, a Johnson & Johnson company, Raritan, New Jersey, USA.
¹⁸ Oregon Center for Aging & Technology, Department of Neurology, Oregon Health & Science University, Portland, Oregon, USA.
¹⁹ Critical Path for Parkinson's Consortium- Critical Path Institute, Tucson, Arizona, USA.
²⁰ Dementia Research Centre, Department of Neurodegenerative Disease, Queen Square Institute of Neurology, University College London, Box 16, National Hospital for Neurology and Neurosurgery, London, UK.

PMID: 40285380
PMCID: PMC12032191
DOI: 10.1002/alz.70082

Abstract

Frontotemporal degeneration (FTD) is a rare neurodegenerative disease in which patients can present with cognitive, behavioral, motor, and speech impairment. Currently, there are no approved therapies available to slow or halt disease progression. Detection and monitoring of patient symptoms is challenging for this heterogeneous disease and has negatively impacted progress in FTD clinical trials. Rapid technological advancements can promote the development of digital health technologies (DHTs) capable of capturing even the most subtle clinical impairments. DHTs are computing platforms being designed to measure meaningful aspects of disease onset and progression. Here we present some of the numerous tools currently being developed to measure changes in the functional domains that become impaired in FTD, challenges faced by developers, and a proposed roadmap for developing fit-for-purpose DHTs that will aid in the development of effective therapies for FTD. HIGHLIGHTS: DHTs are being developed to assess FTD onset and progression. Tool developers must overcome numerous challenges in creating effective applications. Guidance to tool developers aims to benefit FTD drug development and patient care.

Keywords: dementia; diagnostics; digital health technologies; disease progression and monitoring; frontotemporal degeneration; neurodegeneration.

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Conflict of interest statement

Oregon Health & Science University (OHSU) and Z. Beattie have a financial interest in Life Analytics, Inc., a company that may have a commercial interest in the results of this research and technology. This potential conflict of interest has been reviewed and managed by OHSU. Dr. Staffaroni provides consulting for Alector Inc., CervoMed, Eli Lilly and Company/Prevail Therapeutics, Passage Bio Inc., and Takeda Pharmaceutical Company and receives licensing fees as a co‐inventor of smartphone cognitive tests. Dr. Hansen is an employee of Johnson & Johnson Innovative Medicine and may hold stock options or shares in the company but has no non‐financial competing interests. All other authors have nothing to disclose. Author disclosures are available in the Supporting Information.

References

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Developing digital health technologies for frontotemporal degeneration

Affiliations

Developing digital health technologies for frontotemporal degeneration

Authors

Affiliations

Abstract

Conflict of interest statement

References

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