Profile for Brain Disease Research Infrastructure for Data Gathering and Exploration (BRIDGE) Platform

Abstract

Brain diseases complexity have necessitated advanced research platforms for better understanding, treatment, and prevention strategies. However, existing brain disease registries face limitations such as incomplete variable sets, lack of standardization, insufficient linkage to external databases, absence of integrated platforms for comprehensive data collection, and lack of continuity. To address these challenges, the Korea National Institute of Health initiated the Brain disease Research Infrastructure for Data Gathering and Exploration (BRIDGE), a national prospective platform designed to overcome the shortcomings of current registries. The BRIDGE platform includes a Longitudinal Study of Early onset dementia And Family members (LEAF) cohort, a Longitudinal/cohort Study of Patients with Late Onset Dementia (LLOD) cohort, a community-based cohort study of High-risk individuals for Dementia (COHD) cohort, and a Longitudinal Study of Patients with Parkinson's Disease (LoPD) cohort. The standardized variables included sociodemographic variables, health behaviors, medical history, activities of daily living, behavioral, and psychological problems, cognitive function, disease-related symptoms, quality of life (QoL), sleep, depression scale, caregiver burden, physical health, blood tests, olfactory function testing, orthostatic blood pressure changes, genetic testing, nerve conduction studies, and neuroimaging. In addition, the BRIDGE platform will be linked to the Korean National Health Insurance Service (K-NHIS) database. By addressing gaps in data collection, standardization, and considering a wide range of impacts, the BRIDGE database offers new pathways for understanding and combating complex brain conditions. As the project progresses, it has the potential to significantly influence scientific understanding and policymaking in the field of brain health.

Figure 1.

Schematic representation of BRIDGE platform infrastructure. BRIDGE, Brain disease Research Infrastructure for Data Gathering and Exploration; LEAF, the Longitudinal Study of Early onset dementia And Family members cohort; LLOD, the Longitudinal/cohort Study of Patients with Late Onset Dementia cohort; COHD, the Community-based cohort study of High-risk individuals for Dementia cohort; LoPD, the Longitudinal Study of Patients with Parkinson’s Disease BRIDGE platform provides a web-based electronic case report forms (eCRFs) input system for LEAF, LLOD, COHD and LoPD cohort studies, allowing participating centers in each cohort to easily access online and register the collected data. It maintains high-quality data by monitoring, making improvements of eCRF system for efficiency and accuracy, and cleansing according to prepared data management plans (DMPs). The bio-resources collected in each cohort would be shared with researchers for brain disease research by National Biobank of Korea, and data information could be found on the public website. BRIDGE platform database, built through data standardization and harmonization, could be linked not only between each cohort but also with external research projects.

Figure 2.

The process to develop BRIDGE platform. BRIDGE, Brain disease Research Infrastructure for Data Gathering and Exploration.