Table 2.

Givosiran clinical trial results

Phase 1/2Phase 3 double-blind periodOLE, 36 months
Dates 6 May 2015-6 September 2017 16 November 2017-31 January 2019 Through 3 May 2021 
Patient number 17 AIP patients with recurrent attacks (Parts A and B), 23 AIP patients without recurrent attacks (Part C) 94 AHP patients with recurrent attacks 93 AHP patients enrolled
14 discontinued
79 completed 
Gender 78% female, parts A/B; 88% female, part C 89% female 89% female 
Age (years) Median 47 (range, 30-64), parts A/B; 36 (21-59), part C on givosiran 39.0 ± 11.4 (mean, SD) for AIP patients Median, 37.5 (range, 19-65) 
AHP types All AIP 89 AIP, 1 HCP, 2 VP, 2 no identified mutation 89 AIP, 4 other AHP 
Previous hemin prophylaxis 46% of patients on givosiran in part C 40% 40% 
Attack rate decrease (%) 79% reduction in median attack rate for recurrent attack patients 74% and 90% reduction in the mean and median AAR, respectively 92% reduction in median AAR for placebo crossover group. Median AAR 0.4 across both placebo crossover and continuous givosiran groups. 
Urinary PBG decrease (%) Maximum reduction 96%, dose dependent 91% decrease in median urinary PBG Sustained improvement 
Urinary ALA decrease (%) Maximum reduction 91%, dose dependent 86% decrease in median urinary ALA Sustained improvement 
Quality of life Not reported Improved Sustained improvement 
Liver adverse events No clinically significant changes in laboratory measures ALT level of more than 3  ×  ULN in 15% of givosiran group and 2% of placebo, to 9.9  ×  ULN in one patient leading to discontinuation. ALT later normalized in all patients. 11% of patients had elevated ALT levels >3  ×  ULN, generally ~3-6 months with resolution over time. 
Kidney adverse events No clinically significant changes in laboratory measures Abnormal renal function in 15% of givosiran group and 7% of placebo <25% of patients had renal adverse events, with small initial decreases in renal function stabilizing over time. 
Other adverse events Nasopharyngitis, abdominal pain, diarrhea, and injection site reaction, but similar incidence among treatment groups. One patient on givosiran died of hemorrhagic pancreatitis. Adverse events reported more commonly than placebo included nausea, injection site reactions, chronic kidney disease, rash, increased ALT, and fatigue. The most frequent adverse events were injection site reactions and nausea. Sixteen percent of patients experienced elevated homocysteine levels. Four patients discontinued therapy due to treatment-related adverse events that included injection site reaction, elevated homocysteine level, pancreatitis, drug hypersensitivity, and abnormal liver biochemistries. 
Phase 1/2Phase 3 double-blind periodOLE, 36 months
Dates 6 May 2015-6 September 2017 16 November 2017-31 January 2019 Through 3 May 2021 
Patient number 17 AIP patients with recurrent attacks (Parts A and B), 23 AIP patients without recurrent attacks (Part C) 94 AHP patients with recurrent attacks 93 AHP patients enrolled
14 discontinued
79 completed 
Gender 78% female, parts A/B; 88% female, part C 89% female 89% female 
Age (years) Median 47 (range, 30-64), parts A/B; 36 (21-59), part C on givosiran 39.0 ± 11.4 (mean, SD) for AIP patients Median, 37.5 (range, 19-65) 
AHP types All AIP 89 AIP, 1 HCP, 2 VP, 2 no identified mutation 89 AIP, 4 other AHP 
Previous hemin prophylaxis 46% of patients on givosiran in part C 40% 40% 
Attack rate decrease (%) 79% reduction in median attack rate for recurrent attack patients 74% and 90% reduction in the mean and median AAR, respectively 92% reduction in median AAR for placebo crossover group. Median AAR 0.4 across both placebo crossover and continuous givosiran groups. 
Urinary PBG decrease (%) Maximum reduction 96%, dose dependent 91% decrease in median urinary PBG Sustained improvement 
Urinary ALA decrease (%) Maximum reduction 91%, dose dependent 86% decrease in median urinary ALA Sustained improvement 
Quality of life Not reported Improved Sustained improvement 
Liver adverse events No clinically significant changes in laboratory measures ALT level of more than 3  ×  ULN in 15% of givosiran group and 2% of placebo, to 9.9  ×  ULN in one patient leading to discontinuation. ALT later normalized in all patients. 11% of patients had elevated ALT levels >3  ×  ULN, generally ~3-6 months with resolution over time. 
Kidney adverse events No clinically significant changes in laboratory measures Abnormal renal function in 15% of givosiran group and 7% of placebo <25% of patients had renal adverse events, with small initial decreases in renal function stabilizing over time. 
Other adverse events Nasopharyngitis, abdominal pain, diarrhea, and injection site reaction, but similar incidence among treatment groups. One patient on givosiran died of hemorrhagic pancreatitis. Adverse events reported more commonly than placebo included nausea, injection site reactions, chronic kidney disease, rash, increased ALT, and fatigue. The most frequent adverse events were injection site reactions and nausea. Sixteen percent of patients experienced elevated homocysteine levels. Four patients discontinued therapy due to treatment-related adverse events that included injection site reaction, elevated homocysteine level, pancreatitis, drug hypersensitivity, and abnormal liver biochemistries. 

AAR, annualized attack rate; AHP, acute hepatic porphyria; AIP, acute intermittent porphyria; ALA, d-aminolevulinic acid; ALT, alanine aminotransferase; PBG, porphobilinogen; SD, standard deviation; ULN, upper limit of normal.

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