What is PHederation?

PHederation - the Pulmonary Hypertension federated network of real-world data assets.


Foster
collaborations between various
stakeholders to research on larger
PH-populations

Maintain original data ownership
Implement governance and privacy
Map data to OMOP CDM* and provide integrated analysis software
Reduce time from research question to results

 

How does PHederation work?

 

Purpose:
PHederation is a federated network of Data Assets to foster Real World Evidence research related to Pulmonary Hypertension

Codex of Collaboration:
To ensure transparency and maintenance of scientific objectivity, PHederation shall incorporate and maintain a mechanism (e.g. a portal or a repository), where all organizational and operational documents and board meeting minutes must be visible to all PHederation Participants

PHederation board:
The PHederation Board shall consist of one distinct Participant per each Data Asset who has the requisite authority within its organization to vote at the meetings of the PHederation Board. The PHederation Board is the highest governance and decision-making body of PHederation.

Ownership:
Data Assets
Individual Data Assets remain in the ownership of the Network Participants (data owners)

Research Results
Any ownership of resulting research products and intellectual property originating from PHederation is defined separately by the PHederation Board

Platform
PHederation interface and infrastructure are fully owned and operated by Actelion Pharmaceuticals Ltd

 

REFERENCE: 19016998 | DATE OF PREPARATION: DECEMBER 2019