The NIH precision brain health network: open and inclusive measurement of neuropsychological change for ad/adrd primary prevention trials - accurate and sensitive measurement of neuropsychological…

The NIH precision brain health network: open and inclusive measurement of neuropsychological change for ad/adrd primary prevention trials - accurate and sensitive measurement of neuropsychological change is essential for advancing dementia prevention, especially during midlife when changes related to alzheimer's disease and alzheimer's disease- related dementias (ad/adrd) begin but symptoms are not yet evident. In response to RFA-AG-25-005, we propose to develop the NIH precision brain health network (pbhn) to provide the research community with open, flexible, and usable tools to enhance the measurement of cognitive change and promote applied brain health. Our objectives are as follows: aim 1: establish an organizational and governance structure that prioritizes transparency and broad-based scientific collaboration in developing and validating measures. The network will be organized into four scientific cores: data, measures, applied validity, and dissemination, each CO-led by experts from different institutions. An administrative core will manage operations, financial oversight, and communication, with governance provided by a steering committee. Aim 2: compile, publish, and evaluate a comprehensive inventory of measurement tools for ad/adrd prevention research. By leveraging existing resources and input from researchers and practitioners, we will create a publicly available inventory that will be updated annually. Tools will be assessed for scalability, openness, scientific utility, and sensitivity to change across a range of study settings and contexts. Aim 3: develop new tools and collect additional data to address unmet needs. We will establish an innovation pipeline supporting data collection initiatives, pilot studies, and mentored projects, with a focus on measurement approaches adaptable to a variety of real-world settings. This includes repurposing proprietary measures for open-source distribution. Aim 4: disseminate and implement open measurement tools into research studies through a public-facing website and the pbhn open measures toolkit. This web application will provide plug-and-play assessments, documentation, protocols, resources, and educational content, ensuring usability across different expertise levels. Feedback from key partners will enhance educational materials. The pbhn will establish foundational infrastructure to support future ad/adrd primary prevention research, foster collaboration, drive measurement innovation, and develop reliable tools for precision monitoring of brain health.