Neural Correlates of Recovery from Aphasia After Stroke

NIH RePORTER · NIH · R01 · $174,720 · view on reporter.nih.gov ↗

Abstract

Project Summary/Abstract Aphasia is one of the most common and debilitating consequences of stroke. Fortunately, most individuals with aphasia after a stroke experience some degree of recovery of language function over time, which is thought to depend on neural plasticity. The overall goals of the parent project are to better characterize the neural correlates of recovery from aphasia after stroke, and to investigate which patterns of functional reorganization are associated with the most favorable language outcomes. These goals are addressed in the context of a longitudinal study of recovery from aphasia in the first year after stroke. This longitudinal study has generated an extensive dataset of audiovisual recordings of speech and language evaluations in individuals with aphasia at multiple timepoints, including connected speech samples. The majority of participants have consented to sharing these valuable audiovisual recordings, and there are many potential benefits to sharing these data, including research applications (e.g., different analyses of the data than those we planned) and clinical education (e.g., the opportunity to listen to and watch individuals recover over time, with concurrent access to their neuroimaging findings). Yet, there are substantial privacy concerns, because audiovisual recordings which include voices and faces cannot be deidentified even in principle. In deciding how to balance considerations about data sharing and patient privacy, it is critical to take into account the perspectives of people with aphasia and their care partners. Ethical concerns surrounding the sharing of identifiable audiovisual data, particularly in vulnerable populations such as individuals with aphasia, remain underexplored. This administrative supplement explores the attitudes of individuals with aphasia and their care partners towards sharing identifiable audiovisual data. Through thematic analysis of in-depth semi-structured interviews, we aim to identify key themes and factors influencing attitudes towards data sharing in this population. We will then analyze informed consent processes related to data sharing across multiple labs, and generate recommendations for the ethical sharing of audiovisual speech and language data from individuals with aphasia. This is a project specific to bioethics research, which aims to support the development of an evidence base that may inform future policy directions. By understanding the attitudes of individuals with aphasia and their care partners towards sharing identifiable audiovisual data, researchers and policymakers can develop more ethical and inclusive data sharing practices.

Key facts

NIH application ID
11063381
Project number
3R01DC013270-10S1
Recipient
VANDERBILT UNIVERSITY MEDICAL CENTER
Principal Investigator
Stephen M Wilson
Activity code
R01
Funding institute
NIH
Fiscal year
2024
Award amount
$174,720
Award type
3
Project period
2014-06-01 → 2025-07-15