TY - INPR ID - discovery10205787 N2 - Background: Autosomal dominant polycystic kidney disease (ADPKD) is caused primarily by pathogenic variants in the PKD1 and PKD2 genes. Although the type of ADPKD variant can influence disease severity, rare, hypomorphic PKD1 variants have also been reported to modify disease severity or cause biallelic ADPKD. This study examines whether rare, additional, potentially protein-altering, non-pathogenic PKD1 variants contribute to ADPKD phenotypic outcomes. Methods: We investigated the prevalence of rare, additional, potentially protein-altering PKD1 variants in patients with PKD1-associated ADPKD. The association between rare, additional, potentially protein-altering variants and phenotypic outcomes, including progression to kidney failure, age at onset of hypertension and urological events, height-adjusted total kidney volume, and predicting renal outcomes in PKD (PROPKD) score, were examined. Results: Rare, additional, potentially protein-altering variants were detected in 6% of the 932 ADPKD patients in the study. The presence of rare, additional, potentially protein-altering variants was associated with 4 years earlier progression to kidney failure (hazard ratio (HR): 1.66; 95% confidence interval (CI): 1.18?2.34; P = 0.003), with in-trans rare, additional, potentially protein-altering variants (n = 13/894) showing a greater risk of kidney failure (HR: 1.83; 95% CI 1.00?3.33; P = 0.049). We did not detect statistically significant differences between rare, additional, potentially protein-altering variants and other phenotypic outcomes compared to those without rare, additional, potentially protein-altering variants. Conclusions: In patients with PKD1-associated ADPKD, our findings suggest that rare, additional, potentially protein-altering variants in PKD1 may influence disease severity. These findings have potential clinical implications in counselling and treating patients with rare, additional, potentially protein-altering variants, but further investigation of such variants in larger, longitudinal cohorts with detailed, standardised phenotype data is required. SN - 1121-8428 UR - https://doi.org/10.1007/s40620-025-02211-x PB - SPRINGER HEIDELBERG JF - Journal of Nephrology KW - Science & Technology KW - Life Sciences & Biomedicine KW - Urology & Nephrology KW - Genetic burden KW - PKD KW - ADPKD KW - Disease severity KW - Prognosis KW - MUTATION A1 - Elhassan, Elhussein AE A1 - Collins, Kane E A1 - Heneghan, Sophia A1 - Gilbert, Edmund A1 - Yang, Hana A1 - Senum, Sarah R A1 - Schauer, Rachel S A1 - Elbarougy, Doaa E A1 - Madden, Stephen F A1 - Murray, Susan L A1 - Sadeghi-Alavijeh, Omid A1 - Carmichael, Joshua A1 - Gale, Daniel A1 - Osman, Shohdan M A1 - Kennedy, Claire A1 - Griffin, Matthew D A1 - Casserly, Liam A1 - Moloney, Brona A1 - O'Hara, Paul A1 - Mallawaarachchi, Amali A1 - Ciurli, Francesca A1 - Genomics England Consortium, John C A1 - Graziano, Claudio A1 - Wolff, Constantin A A1 - Schonauer, Ria A1 - LaManna, Gaetano A1 - Durand, Axelle A1 - Limou, Sophie A1 - Halbritter, Jan A1 - Capelli, Irene A1 - McCann, Emma A1 - Harris, Peter C A1 - Cavalleri, Gianpiero L A1 - Benson, Katherine A A1 - Conlon, Peter J TI - The impact of a secondary, rare, non-pathogenic PKD1 variant on disease progression in autosomal dominant polycystic kidney disease EP - 11 AV - public Y1 - 2025/01/01/ N1 - Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. ER -