Data Management and Statistical Core

REVISED ABSTRACT: The Data Management and Statistics Core (Data Core) of the Massachusetts Alzheimer’s Disease Research Center (MADRC) provides state-of-the-art data management and statistical expertise for the MADRC and affiliated research studies, for collaborative efforts with other ADRCs, and for national AD/ADRD research initiatives. The Data Core is an essential component of the MADRC research enterprise as it facilitates scientific rigor, regulatory-compliance, and strong connectedness across cores within our Center, and with NACC and others outside our Center. It serves to minimize the burdens of research by optimizing study efficiencies through subject selection, endpoint selection, facile and adaptive designs, as well as provides guidance on rigorous study design and analyses. The Data Core provides informatics expertise and assistance, including data-management, timely data transmission to NACC, and query and reporting support to all the MADRC Cores. The Core will play a major role in helping MADRC achieve its overarching goal of understanding drivers of clinical progression. The Core aims to contribute easily accessible data resources and statistical expertise to local, regional, national, and international ADRD research (Aim 1); to develop, implement, and share new statistical, machine learning, and bioinformatics methods to better understand inter-individual variability in the pace of change. We will utilize data from natural history studies combined with computational approaches to better understand how new treatment modalities affect clinical progression and impact research. (Aim 2); to train clinical and translational researchers from all backgrounds in quantitative methods and attract quantitative scientists to ADRD research by collaborating with the Research Education Component (REC) to train clinical and translational researchers in quantitative methods and to attract quantitative scientists to AD/ADRD research (Aim 3); and to maximize the Research Cohort and other ADRD research participants by optimally leveraging data and technology for recruitment into research studies and clinical trials, as well as to maximize staff and faculty engaged in ADRD data science (Aim 4). We will freely disseminate our methodological innovations to the scientific community and promote open and reproducible science through data and software sharing. The Data Core provides guidance on scientific rigor: it assists MADRC researchers with study design and ensures valid and accurate analyses of studies across all MADRC Cores. The Data Core also advises MADRC researchers on data quality, version control and tracking measures. It ensures all systems are secure and within the Mass General Brigham (MGB) IT Infrastructure. The Core promotes open and reproducible science by disseminating methodological innovations to the scientific community and through data and software sharing.