Registry Substudy Info

Interested in developing a registry sub-study?

We are introducing a new multi-stakeholder model of engagement, whereby the IPPF, in collaboration with researchers spanning industry, academia and medicine, can establish sub-studies to propel research for rare conditions. This new functionality allows for partnerships that bring stakeholders together to accelerate the pace of research for rare conditions, while ensuring patient communities remain empowered as partners throughout the process.

Let us know if you are interested by emailing