Read about the next generation of pediatric narcolepsy studies.

Read about how additional datasets were added to a pre-existing CDKL5 patient registry through the use of a global unique identifier (GUID).

Discover the insights gathered from the POTENT study on EGFR mutations in NSCLC.

Read about how PIP-UK and Pulse Infoframe enabled rapid recruitment to the Poland Syndrome Community Register.

Read about the latest insights from pediatric narcolepsy studies.

Read about the creation of the first patient registry for Birt-Hogg-Dubé (BHD) syndrome.

What’s next for the CDKL5 Registry?

The journey to-date of the CDKL5 Registry.

A rare community united for common good.

Learn more about the Poland Syndrome Community Register, collecting data since 2021.

Discover the journey that drugs undergo from discovery to approval, plus how real-world data and evidence can help.

Everything you need to know about BIRT, the Birt-Hogg-Dubé Syndrome International Registry.

Learn about the best ways to recruit participants for your patient registry.