26 Oct, 2021 New International Survey Presented at ACG 2021 Sheds Light on AHP Burden
The POWER study (POrphyria Worldwide Patient Experience Research) surveyed 92 patients living with acute hepatic porphyria (AHP) around the world to bring to light the emotional, mental, and physical burden of AHP on the individual and their social circle. Survey participants reported substantial emotional burden associated with AHP, citing moderate to severe depression and anxiety. They also reported significant pain levels and work impairment. These data are being presented at the American College of Gastroenterology (ACG) Annual Scientific Meeting 2021. Encore 24-month interim data from the open-label extension period of the ENVISION Phase 3 study of GIVLAARI® (givosiran) in patients with AHP will also presented, along with additional findings on the burden of AHP.
Dickey, et al. “POWER (Porphyria Worldwide Patient Experience Research) Study: Impact of Acute Hepatic Porphyria Assessed Through an International Patient Survey”
Bonkovsky, et al. “Efficacy and Safety of Givosiran in Patients with Acute Hepatic Porphyria: 24-Month Interim Analysis of the Phase 3 ENVISION Randomized Clinical Trial”
Wang, et al. “Disease Burden in Patients with Acute Hepatic Porphyria: Experience from the Phase 3 ENVISION Study”
Cassiman, et al. “EXPLORE Part B: A Prospective, International, Long-term Natural History Study of Patients with Acute Hepatic Porphyria with Recurrent Symptoms”