To provide a robust, transparent, reliable, up-to-date interface for PH Real-World Data assets and sources, and for collaborative research.
Research is more powerful and efficient in a network of data assets than in individual assets
Join the network
The network enables participating partners to contribute and to have access to aggregated real-world data in a standardized manner. This sharing of data fosters collaboration to find solutions, often to the same research questions, using multiple data sources.
PHederation participating parties can initiate a study and invite others to join without the patient data leaving the institution that owns it. These data sets remain, behind firewalls, at the contributing participant’s institution thus ensuring complete protection of patient privacy. Data dashboards will describe data assets content for interested partners.
How does it work?
- A participating partner raises a research question and invites others to collaborate in a study
- They jointly develop the study design and protocol
- The protocol and programming code are shared via the PHederation platform with all participating parties
- The data set owner executes the programming code and shares the results on the PHederation platform with the study team partners to interpret the results.
Strong governance is imperative with oversight of all activities provided by the PHederation board, comprised of a representative from each partner.
The PHederation governance principles are:
Are you interested in joining forces to advance the science in PH? Together we are looking to create a diverse network with participants from around the globe.
Contact us to learn more.
REFERENCE: 19016998 | DATE OF PREPARATION: DECEMBER 2019