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Nov 18

Ensuring No Duplicates: Implementing a GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease

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 the CANDID clinical study, an observational endpoint study on CDKL5 deficiency disorder (CDD) recently announced by the Loulou Foundation. This... read more →
Sep 30

Pulse Infoframe and C-Path Establish Patient-Centered Data Harmonization Partnership to Accelerate Collaborative Research in Rare Disease

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 research and drug development. In addition, both organizations will support the creation of more streamlined and transparent informed consent processes... read more →
Sep 08

Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry

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 group for Alport syndrome, a rare kidney disease, will be joining the National Kidney Foundation (NKF) Patient Network. Powered by... read more →
Sep 08

Patient Registries

https://www.youtube.com/watch?v=Thz9e7zxwpk Patient advocate and CATS Foundation co-founder Daniel Lewi shares his insights on the importance of a patient registry.
Sep 08

Patient Advocacy

https://www.youtube.com/watch?v=s1OvC-Xap-A Patient advocate and CATS Foundation co-founder Daniel Lewi shares his journey as a patient advocate.
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