Objective/Rationale:
MJFF is funding the expansion of two international LRRK2 cohorts to gain insight into the relationship of this genetic mutation to Parkinson’s disease. Within each funded study, clinical data will be collected on hundreds of individuals characterizing their clinical features of LRRK2. With multiple investigators and countries involved in each study, MJFF is looking to standardize the data collected into one central database for widespread analysis. While each funded study will focus on their individual hypotheses, MJFF wants to ensure that the data collected can be combined for use on a larger research scale.
Project Description:
Cindy Casaceli, at the University of Rochester’s Analytic Data Integrity Group, is building a centralized database to house data from the MJFF-funded studies. The investigators from the LRRK2 cohort projects have agreed to collect a number of identical outcome measures from their populations – this information will then be transferred into the central database. All information housed within the database will be stripped of any personal identifying information and will comply with all applicable privacy laws.
Six months after the MJFF-funded groups have completed their projects, the data within this combined database will be made available to the research community via a Steering Committee monitored application process for further analysis.
Relevance to Diagnosis/Treatment of Parkinson’s Disease:
The development of a database that houses clinical information on hundreds of individuals with the LRRK2 mutation or directly related to someone with the mutation will be a valuable resource for the research community. The data can be mined to identify biomarkers, pre-Symptoms & Side Effects markers or other disease trends among the population, and the goal is that the data will provide insight into the many remaining questions about LRRK2 and its connection to PD.
Anticipated Outcome:
The main goals of this project is to combine portions of the datasets collected by two MJFF-funded LRRK2 cohorts, and to make this data available to the research community in the hopes that together they can provide some answers into how and why LRRK2 is connected to PD.