Newswise — Emily Rogalski, PhD, the Rosalind Franklin PhD Professor of Neurology at the University of Chicago, is one of two multiple principal investigators (MPIs) awarded a grant from the National Institutes of Health (NIH) to advance the Communication Bridge Research Program for primary progressive aphasia (PPA). Totaling about $13.2 million over five years, this round of funding will support a clinical trial of an intervention designed to help individuals affected by PPA, a form of dementia characterized by language difficulties, by leveraging telehealth strategies and wearable sensor technology.
"PPA is a relatively uncommon but devastating condition that profoundly impacts individuals in the prime of their lives, often during their 50s and 60s, when they are actively engaged in their careers and raising families," Rogalski said. "Unlike Alzheimer's dementia, which primarily affects memory, PPA manifests as difficulties with language comprehension and expression, posing unique challenges for diagnosis and intervention." PPA is complex, as it can be caused by the plaques and tangles of Alzheimer’s disease or other neurodegenerative diseases.
This latest clinical trial builds upon Rogalski's pioneering work in telehealth-based interventions for PPA. Previous studies demonstrated the feasibility and gains of remotely connecting speech-language pathologists with individuals affected by PPA, using video chat to provide tailored strategies designed to improve communication and maximize quality of life. The research team, including MPI Angela Roberts, PhD, from Western University in Canada, created a custom web application that allows patients to access support at any time. Since the intervention is delivered remotely and asynchronously, people can participate from all around the world.
"Not only are we focused on improving immediate communication outcomes for individuals with PPA, but we are also exploring long-term strategies to help them navigate the progressive nature of the disease," Rogalski said. "By incorporating wearable sensors and objective measurements of daily activities, we aim to provide a holistic approach to care that addresses both the immediate needs and the evolving challenges faced by individuals with PPA."
The Communication Bridge Research Program will enroll 100 dyads, comprising individuals with PPA and their communication partners (often spouses or caregivers), in a randomized controlled trial (RCT) that spans 14 months. Participants will receive remote interventions aimed at enhancing communication skills from expert clinicians. The effectiveness of the program will be evaluated through both subjective measures – reports from individuals living with a diagnosis of PPA and their communication partners – and objective measures – data from wearable sensors that can track things like sleep quality and number of social interactions.
"By engaging those living with PPA, caregivers, advocacy groups and clinicians, we are ensuring that our research is grounded in the needs and perspectives of multiple stakeholders," Rogalski said.
In addition to assessing the clinical effectiveness of our interventions, the researchers are conducting a cost-effectiveness analysis to ensure their approaches are feasible for widespread implementation in real-world settings.
The grant funding will support recruitment efforts, intervention implementation and the integration of new elements such as wearable sensor technology into the trial. Rogalski emphasized the broader implications of this research beyond PPA, highlighting the potential for adapting the telehealth model to other neurological conditions.
"While our immediate focus is on improving care for individuals with PPA, the infrastructure and methodologies developed through this research have the potential to benefit a wide range of neurological conditions, including Parkinson's disease, Alzheimer's disease and stroke-related aphasia," she said. "By leveraging technology to connect individuals with expertise regardless of geographical location, we are addressing critical challenges in access to care and support."
Individuals affected by PPA who are interested in participating in the Communication Bridge Research Program are encouraged to connect with the study team by emailing [email protected] to learn more about enrollment opportunities. Rogalski emphasized the importance of raising awareness about PPA and the need for continued research and innovation in this field.
"This grant represents a significant step forward in our efforts to improve the lives of individuals affected by PPA," Rogalski said. "By advancing our understanding of the disease and developing innovative interventions, we are providing hope and support to a community that has historically been underserved and overlooked."
Visit the HAARC Center Participant Registry to stay up to date with news and study information.
Research reported in this publication was supported by the NIH's National Institute on Aging R01AG055425. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
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