A key objective of MINDDS is to establish methods and protocols to capture and integrate NDD patient data within discoverable databases, ensuring that it is available for data sharing and health informatics. WG4 will seek optimal approaches to address the three-fold needs of (i) access to a patient registry for NDD; (ii) supporting research and health informatics projects; and (iii) a web-based knowledge exchange “nexus”.
To avoid variation due regional differences, such as language, culture and local healthcare provision, common data elements will be proposed to ensure interoperability and harmonization of phenotype data.
Infrastructural requirements, such as data storage capacity, security and procedures for data sharing compliant with ethical and regulatory requirements will be considered and recommendations made for the benefit of future projects.
