WG4: Databases and informatics

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.


Establish methodologies for patient registration, considering different models from clinical based to patient self-registration. Mechanisms for integration between multiple sites and with existing cohort data, and future inter-operability will be investigated.

We will define the specifications of a research database, including control semantics and ontologies for multiple site inputs, access, confidentiality and data outputs. The database entry will be aligned to existing cohort databases.

Major outputs (SOPs, guidelines, data resources, etc.) will be made available via online resources, the “knowledge nexus”. This will comprise of different domains written and populated appropriately for the following stakeholders: patients; clinicians and policymakers; and researchers (preclinical, clinical and industrial). The clinical domain will support online learning resources.