Development of RS1-specific ACMG/AMP variant classification criteria with pilot variant curation
Gene-based therapies are being developed for retinal diseases, including RS1-related X-linked retinoschisis. Therefore it is essential to determine which variants are pathogenic and which are benign when enrolling patients. The Clinical Genome Resource (ClinGen) X-Linked Inherited Retinal Diseases (XLRD) Variant Curation Expert Panel (VCEP) brings together clinician scientists, molecular biologists, and geneticists to apply their expertise and review the clinical, genetic, population, and functional evidence for variants. American College of Medical Genetics (ACMG) guidelines have been modified for RS1 to develop a highly systematic and conservative framework for evaluating variants. The curation process involves applying 28 different codes, each with 4 strength levels (very strong, strong, moderate, supporting) across different domains of phenotype, population data, computational assessment, functional impact, and segregation. With RS1-specific rules, a total of 54 pilot variants were tested. These included 47 variants in ClinVar. Of these 21 variants were re-classified: 2 likely pathogenic variants and one likely benign were changed to variants of uncertain significance and 4 previously unclassified variants were changed to pathogenic, likely pathogenic and likely benign. Other changes resolved conflicts or multiple classifications.
Authors
- L.S. Sullivan
- Sarah Hull (ORCID: https://orcid.org/0000-0002-8834-6641)
- R.B. Hufnagel
- K. Lee
- G. Wang
- R.A. Lewis
- R. Chen
- W. Hankey
- R. Ayyagari
- P. A. Sieving
- K. C. Worley
- H. M. J. Hussain
- M. Mero
- M. D. Benson
- L. Haer-Wigman
- K. Kämpjärvi
- C. Zeitz
- on behalf of the ClinGen X-linked Inherited Retinal Disease Variant Curation Expert Panel
- M. Wang
Institutions
- University of North Carolina at Chapel Hill (US)
- Centre National de la Recherche Scientifique (FR)
- University of North Carolina Health Care (US)
- Institut de la Vision (FR)
- Kaiser Permanente (US)
- Radboud University Nijmegen (NL)
- University of Auckland (NZ)
- University of Alberta (CA)
- Inserm (FR)
- Baylor College of Medicine (US)
- University of California, Irvine (US)
- UC San Diego Health System (US)
- LabCorp (United States) (US)
- Radboud University Medical Center (NL)
- University of California San Diego (US)
- Sorbonne Université (FR)
- Auckland University of Technology (NZ)
- Blueprint Genetics (Finland) (FI)
- The University of Texas Health Science Center (US)
- University of California, Davis (US)
- The University of Texas Health Science Center at Houston (US)
Publication Details
- Journal
- Human Genetics
- Published
- 2026-09-04
- DOI
- https://doi.org/10.1007/s00439-026-02871-0
- Primary Topic
- Retinal Development and Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Research to Prevent Blindness
- University of Auckland
- Agence Nationale de la Recherche
- Institut National de la Santé et de la Recherche Médicale
- National Institutes of Health
- University of California, Irvine