MJFF is funding multiple international LRRK2 cohorts to gain insight into the relationship of this genetic mutation to Parkinson’s disease. Using standardized methods, investigators in several countries will collect clinical data and biological samples from thousands of individuals to characterize the clinical and pathological features of LRRK2. While each funded study will focus on different populations, all data will be housed in a central database and biosamples in central biorepositories to facilitate widespread access and large-scale analysis.
MJFF is working with Matthew Read from PRN to lead the clinical coordination of the various cohorts, the biorepositories and the database development. MJFF is supporting Cindy Casaceli at the University of Rochester’s Analytic Data Integrity Group, to build the central database that will 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. Information housed within the database will be stripped of any personal identifying information and will comply with all applicable privacy laws. Christopher Coffey, from the University of Iowa, is providing statistical support to the groups and to MJFF to ensure the data is useful for larger scientific analyses. MJFF is also working with the Coriell Institute for Medical Research to store the majority of the biosamples collected from the cohorts.
The centralized data and samples will be made available to the research community via a Steering Committee-monitored application process for further analysis in the coming years.
Relevance to Diagnosis/Treatment of Parkinson’s Disease:
The development of the centralized database and biorepositories with biosamples collected on thousands of individuals with or directly related to someone with the LRRK2 mutation will be valuable resources for the research community. They can be mined to identify biomarkers, pre-Symptoms & Side Effects markers or other disease trends among the population with the goal of providing insight into the many remaining questions about LRRK2 and its connection to Parkinson's disease (PD).
We anticipate that centralizing the data and biosamples collected by the various MJFF-funded LRRK2 cohorts and making this information available to the research community will help illuminate how LRRK2 is connected to PD.