Implementing Informatics Tools with Data Management Plans for Disease Area Research

Abstract

Data Management Plans (DMPs) are essential to a research data life cycle. The DMPs should be developed as part of the research programs to be effective. For disease area research, integrating research community-recommended data standards during collection can enhance the likelihood of data reuse. Informatics tools are required as part of DMPs with the aim of data being findable, accessible, interoperable, and reusable. The US National Institutes of Health supports various disease area research programs and has recently finalized the Data Management and Sharing Policy. The policy highlights the importance of sharing data and metadata, including information on various elements such as data types, standards, storage repositories, access, services, and tools used for a proposed research project. The present paper provides Traumatic Brain Injury (TBI) and Parkinson’s Disease (PD) research as examples of where the elements of the policy are being supported. The software tools that have been developed for the TBI and PD plans are available through the Biomedical Research Informatics Computing System. A Protocol and Form Research Management System (ProFoRMS) facilitates researchers to manage research protocols when collecting clinical data. The ProFoRMS also supports automatic validation with the data dictionaries for TBI and Parkinson’s disease. Detailed information on the functionality of the software tools used for preserving data within TBI and PD repositories is openly available on their respective websites.

Keywords

• data management plan
• informatics tools
• traumatic brain injury
• parkinson’s disease