February 17, 2022, London, Canada—The Myrovlytis Trust is creating a patient registry for Birt-Hogg-Dubé Syndrome (BHD) to better understand the epidemiology of the disease, its prevalence, and the disease trajectory,... read more →
Waltham, MA, December 9, 2021 – A collaboration between Cytel and Pulse Infoframe creates a solution that marks a new direction in research for rare disease. This partnership will support... read more →
London, Canada, November 18, 2021—Pulse Infoframe and the Loulou Foundation have announced a collaboration to leverage Pulse Infoframe’s novel globally unique identifier (GUID) model to enable linkage of data from... read more →
London, Canada and Tucson, Ariz., U.S. (September 29, 2021) – Critical Path Institute (C-Path) and Pulse Infoframe announced today their collaboration to advance technologies and tools to further rare disease... read more →
Breaking Down Silos to Accelerate Research for Rare Kidney Disease London, Canada; Scottsdale, United States (September 7, 2021)—Alport Syndrome Foundation and Pulse Infoframe are pleased to announce that the advocacy... read more →
August 12, 2021, London, Canada—PIP-UK is joining Rare Central, the rare disease platform powered by Pulse Infoframe, to create the UK Poland Syndrome Community Register. The PIP UK charity will... read more →
London, Canada; Rhode Island, United States (June 24, 2021) - QualityMetric and Pulse Infoframe announced today their partnership and vision to create the first scientifically validated rare disease instruments across... read more →
Pulse Infoframe & Quinten Health Partner to Advance Precision Medicine Through Real-World Evidence Generation London, Canada; Paris, France (March 23, 2021) — As precision medicine increasingly becomes a reality, there... read more →
Supporting third-party data ingestion, embedded analytics, and consented data access to life sciences, providers, and advocacy organizations London, Canada (March 1, 2021) — Pulse Infoframe Inc., a leader in real-world data and evidence, announces the arrival of healthie™ 2.0, its next-generation evidence platform. Benefiting... read more →
Launching a rare disease patient registry often requires patient advocacy groups to design a registry themselves or pay for an expensive customized solution. With the launch of Rare Central™, Pulse... read more →
