Learn about the diagnostic journey, seizure burden and quality of life among CDKL5 patients.

Presented at ISPOR 2024

Learn about the characteristics and outcomes of early vs. late Uveal Melanoma recurrence.

Presented at the Society of Melanoma Research Congress 2024.

Learn about the burden of pediatric narcolepsy on patients and their caregivers.

Presented at the 2024 International Pediatric Sleep Association Annual Meeting.

Learn about our novel approach to collecting data for GM2 gangliodosis.

Presented at the 2024 WORLD Symposium

Read about how our patient advisory board thinks data collection can be improved for patient advocates and their communities.

Presented at the World Orphan Drug Congress 2023

Read about the next generation of pediatric narcolepsy studies.

Read about the impact of collecting real-world data for CACNA1C related disorders from the CACNA1C Community Registry (CCR).

Presented at the 2024 Genomics England Research Summit

Read about the Alport Patient Registry, launched in August 2023. It is a decentralized, longitudinal  study.

Presented at the 2024 American Society of Nephrology Kidney Week.

Read about how machine learning and artificial intelligence helped determine treatment choices for melanoma patients.

Presented at ISPOR 2023

Learn about our single platform approach strategy and how it enables the integration of prospective and retrospective data.

Presented at ISPOR 2023

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 data that is being generated from our Pan-Canadian Lung Cancer Observational Study (PALEOS) from our latest poster.

Presented at IASLC World Conference on Lung Cancer 2024

Learn about how our decentralized hybrid recruitment strategy has helped the CATNAP pediatric narcolepsy registry grow and improve researchers understanding of the disease.

Presented at APSS SLEEP 2023

Read about how our decentralized approach has led to more diverse participant populations in our registries and studies.

Presented at ISPOR 2023

Read about the latest insights from pediatric narcolepsy studies.

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

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

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

Case studies highlighting the development and growth from our global registries in CDKL5, Melanoma and Uveal Melanoma

Case studies highlighting the development and growth from our global registries in Narcolepsy, CDKL5, Melanoma and Uveal Melanoma

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.