RARE Daily

Pentavere Partners with Takeda to Support Rare Disease Real-World Evidence Analysis in HAE

June 6, 2024

Rare Daily Staff

Pentavere Research Group, a subsidiary of Healwell AI, entered into a partnership and commercial engagement with Takeda Canada to drive real-world evidence analysis for rare diseases, particularly focusing on supporting patients suffering from hereditary angioedema with normal C1 inhibitor across Canada.

Hereditary angioedema (HAE) with normal C1 inhibitor is an ultra-rare disease characterized by life-threatening recurrent, unpredictable swelling, and currently does not have any approved treatments.

The scarcity of real-world data on the prevalence and clinical outcomes of these patients poses a significant challenge to the development of novel therapeutic agents. Recognizing this critical unmet need, Takeda is collaborating with Pentavere and top HAE specialists across Canada to support research into the gaps in treatment guidelines and approved therapies for these patients.

The research collaboration has resulted in the generation of one of the largest cohort datasets globally of hereditary angioedema with normal C1 inhibitor patients.

“When the number of patients is small, the use of AI and data analytics to understand the whole of their patient journey to inform diagnosis and best management is a game changer that could prove as impactful as decoding the human genome,” said Durhane Wong-Rieger, CEO of the Canadian Organization for Rare Disorders. “We are extremely grateful to Pentavere, HEALWELL, and Takeda for investing in this initiative and for including CORD as a partner to drive to a vision where this is available for all patients.”

The comprehensive dataset compiled through this partnership will play a pivotal role in filling the real-world data gap on the burden of disease and clinical outcomes for HAE with normal C1 inhibitor patients. By leveraging advanced data science techniques, Pentavere analyzed this dataset as part of the PROSPECT study to extract actionable insights that can inform treatment strategies and improve patient outcomes. A manuscript and an abstract on the PROSPECT study data are currently under preparation and will be submitted for publication soon.

Pentavere’s DARWEN technology can unlock a deeper understanding of patient treatment needs by enabling effortless data access and rapid insight generation. It has the capacity to harness electronic medical record data and utilizes advanced large language models to analyze disparate and siloed clinical notes that are otherwise very challenging to access, allowing for a allowing meaningful solutions to some of healthcare’s biggest challenges and delivering on the current need for medicine to become more personalized.

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