We Do Data Right.

Video Library

Key Opinion Leader’s

Melanoma Registry PI Dr. Scott Ernst Commends the Pulse Platform for Driving Advanced Melanoma Research
Tracking Biomarkers with Pulse’s Global Melanoma Registry- PI Dr. Scott Ernst
Rare Disease Registry Expert on Custom Patient Surveys in The Pulse Platform
Melanoma Registry PI Dr. Scott Ernst: Why We Built a Global Melanoma Network with the Pulse Platform
Beyond Clinical Trials: Using Pulse’s Global Melanoma Registry to Address what Clinical Trials Can’t – PI Dr. Scott Ernst
Early Natural History to Long-Term Follow-Up: PI Dr. Scott Ernst on Unique Role of Pulse’s Global Melanoma Registry
Loulou Foundation CSO Dan Lavery on the Value of the Pulse Platform

Patient Advocacy Partners

Long term goals of the ASF Alport Patient Registry
Alport syndrome patient & advocate Kevin Schnurr on the importance of enrolling patient registries
Why Are You a Rare Disease Advocate? | Rare Disease Day 2023
Why do you advocate? – Alport Syndrome Foundation
Why You Should Enroll in the ASF Alport Patient Registry – Afton DeLucca
How Has a Patient Registry Helped Your Disease Community? | Rare Disease Day 2023
Kevin’s journey with Alport syndrome
2 Uveal Melanoma Patient Registries Working Together for a Common Goal
What Do You Want to Accomplish With Your Patient Registry? | Rare Disease Day 2023


Who is Pulse Infoframe?
What is the value of an evidence platform?
How do you ensure patient data and information is secure?
What are the challenges associated with having global registries?
What happens to a registry and the data if fundraising runs out?
What are the advantages of Rare Central’s centralized data platform?
How many people do you need to start a registry?
What is a data dictionary and why are they important?
How long will it take to create a registry or migrate an existing one?
What registries exist for my condition and how can I be connected to them?
What does the term co-use of data mean?
How does the Pulse registry platform support precision medicine?