IHCC WORKING GROUP
Data Standards and Infrastructure
Delivering IT standards and infrastructure for IHCC to enable population-scale genomic and biomolecular data accessible across international borders.
Overview
The Data Standards and Infrastructure Working Group focuses on developing and implementing standardized data formats, protocols, and infrastructure to facilitate international collaboration on genomic and biomolecular research. By establishing common standards and streamlined data sharing processes, this working group aims to accelerate scientific discovery, improve global health outcomes, and address the challenges of integrating vast datasets from diverse populations.
Core Initiatives
- Create a federated solution with one or two central hubs for discovery across the IHCC network. The solution would contain:
- Federated data discovery/authentication alignment
- Interoperability/harmonization of data
- Cohort level metadata representation
- Federated research analyses
- Clinical applications
- Findable, Accessible, Interoperable, Reusable (FAIR) data analyses
- Ethical, Legal, and Social Implications (ELSI) of data sharing
- Create an Atlas: A barrier to enhanced reuse is finding the data from the queries of users (researchers, clinicians). An Atlas is a short-term solution in which high-level metadata queries can be conducted with an interactive, searchable database that is updated from cohorts regularly.
- Create a harmonized cohort metadata by first understanding the complexity of metadata in IHCC, and next creating semantic harmonization using established semantic mapping techniques, e.g.:
- International Statistical Classification of Diseases and Related Problems (ICD10)
- SNOMED
- BiobankConnect
Leadership
Carles Garcia, Ph.D.
Working Group Project Manager
Philip Awadalla, Ph.D.
Working Group Lead
Thomas Keane, Ph.D.
Working Group Lead
Join Us!
The Data Standards and Infrastructure Working Group members meet twice a month.
Interested in Joining the Data Standards and Infrastructure Working Group?
Email us at ihccinfo@ihccglobal.org and we will connect you to the team.
