How ASAP’s understanding of Parkinson’s disease is advancing through novel data discovery

Background

Parkinson’s disease (PD) is a progressive, lifelong, neurodegenerative disease that primarily affects a person’s ability to move, often resulting in uncontrolled tremors, stiffness, balance and trouble walking. Other symptoms of PD exist, such as effects on mood, memory, sleep and digestion, but their presence and severity is unique to each individual. Currently there is no one diagnostic test for PD, nor are there any therapeutics available to stop or slow the progression of the disease. Although certain genetic mutations are associated with the development of PD, in the vast majority of cases there is no one single gene directly associated with development of the disease. Learning about the genetics of PD represents a significant opportunity to better understand the disease and discover how to slow or stop its progression.

Aligning Science Across Parkinson’s (ASAP) is a coordinated research initiative to accelerate discoveries for PD. The initiative is managed by the Coalition for Aligning Science (CAS) and implemented through The Michael J. Fox Foundation for Parkinson’s Research (MJFF).

Need

ASAP needed a software solution to support controlled, external access of human postmortem-derived brain sample data generated by their international Collaborative Research Network (CRN) members. They wanted a comprehensive solution that could support federated data sharing as well as provision access to dynamic, cloud-based data holdings by approved researchers. ASAP also needed a simple and easy data access request management tool to help manage data sharing within their network.

Solution

ASAP leveraged Omics AI to facilitate the connection, sharing, and analysis of human postmortem-derived brain sample data through a custom-branded data platform. The solution uses Publisher to connect data and Explorer to share it to the CRN. The platform was designed so that researchers within the CRN, as well as those outside of the network, can easily request access to the data collections through a data access request mechanism managed by their implementation partner The Michael J. Fox Foundation. Bioinformatics services were also engaged to support data curation efforts, and to help guide the data connection process. Engineering services were used to develop custom platform features specific to the needs of the PD research community.