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Longitudinal Phenotypic Trajectories in GNAO1-Related Disorders: Defining Disease Progression and Clinical Profiles

  • Jana Domínguez-Carral
  • , Ana María Domínguez Cobo
  • , Sol Balsells
  • , Anna Aguilar-Ros
  • , Chu Ting Chang
  • , William G. Ludlam
  • , Kathryn Yang
  • , Katerina Bernardi
  • , Micaela Chinigioli
  • , Ainara Salazar-Villacorta
  • , Veronica Di Pisa
  • , Nuria Lamagrande-Casanova
  • , Elena González-Alguacil
  • , Beatriz De la Casa-Fages
  • , Akihisa Okumura
  • , Josefina Rodríguez
  • , Ayush Agarwal
  • , Daniela Muñoz-Chesta
  • , Carolina Reynoso-Osnayo
  • , Amy Lin
  • Brahim Tabarki, Jobaida Parvin, Adolfo Alberto Gallo, Andreia Forno, Fabian Maass, Johnny Montiel Blanco, Salomé Nasif, Elizabeth Jennions, Jorge Luis Ramón-Gómez, Helene Verhelst, Juan José Nieto Barceló, Dunja Čokolić Petrović, Luz Victoria García Ruiz, Christoph van Riesen, Paulo Rego Sousa, Maria del Pilar Massaro Sanchez, Husnea Ara Khan, Wejdan Hakami, Jennifer Friedman, Iván Espinoza-Quinteros, Monica Troncoso, Divyani Garg, Micaela Pauni, Hirokazu Kurahashi, María Concepción Miranda-Herrero, Anna Duat-Rodriguez, Luca Soliani, Manju A. Kurian, Angeles Schteinschnaider, Siddharth Srivastava, Darius Ebrahimi-Fakhari, Kirill A. Martemyanov*, Juan Darío Ortigoza-Escobar*
*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

OBJECTIVE: Pathogenic variants in GNAO1 cause a spectrum of epilepsy, movement disorders, and developmental impairment. Clinical heterogeneity complicates prognosis and therapeutic development. We present the first longitudinal natural history study of GNAO1-related disorders (GNAO1-RD) to delineate phenotypic trajectories.

METHODS: Sixty-six individuals with GNAO1-RD were included in a cross-sectional analysis. Of these, 21 were enrolled in a prospective natural history arm (March 2021-December 2024), undergoing annual standardized evaluations with validated clinical scales to monitor phenotypic progression.

RESULTS: Our cohort exhibited broad phenotypic and severity variability. GNAO1-RD severity scores ranged from 0.5 to 13. Neurodevelopmental impairment varied: 45.5% lacked head control, whereas 22.7% achieved independent walking; and 65% had no expressive language. Movement disorders were nearly universal (95.5%), with dyskinetic crises in 54.5%. Epilepsy affected 51.5%, with different seizure types. Individuals carrying recurrent variants showed consistent phenotypes and severity, supporting a genotype-phenotype correlation reinforced by molecular functional data. Molecular functional analysis for 20 of 31 missense variants correlated with severity scores. Longitudinal data from 21 patients in the natural history cohort showed overall stability or mild improvement across most functional domains. No significant deterioration was observed in global severity, motor function, cognition, or quality of life. However, severe patients experienced progressive worsening of movement disorder.

INTERPRETATION: This largest GNAO1-RD cohort and first longitudinal natural history study provide insights into disease progression. GNAO1-RD generally follows a non-degenerative course, showing stability or mild improvements over time in cognition, language, adaptive skills, and motor function. Importantly, although global severity scores remained stable overall, severe cases showed cumulative functional burden driven by progressive movement disorder, rather than global neurodegeneration. Mortality occurred in a subset of patients because of complications from dyskinetic crises, infections, and epilepsy-related events. Genotype-phenotype data and the GNAO1-RD severity score support early risk stratification and personalized treatment development. ANN NEUROL 2026;100:154-170.

Original languageEnglish
Pages (from-to)154-170
Number of pages17
JournalAnnals of Neurology
Volume100
Issue number1
DOIs
StatePublished - Jul 2026

Bibliographical note

Publisher Copyright:
© 2026 The Author(s). Annals of Neurology published by Wiley Periodicals LLC on behalf of American Neurological Association.

Keywords

  • Humans
  • Female
  • Male
  • Disease Progression
  • Phenotype
  • Cross-Sectional Studies
  • Child
  • Longitudinal Studies
  • Epilepsy/genetics
  • GTP-Binding Protein alpha Subunits, Gi-Go/genetics
  • Adolescent
  • Movement Disorders/genetics
  • Child, Preschool
  • Adult
  • Young Adult
  • Severity of Illness Index
  • Prospective Studies

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