An observational study in Craniosynostoses, Crouzon Syndrome and Saethre Chotzen Syndrome, sponsored by Fondazione Policlinico Universitario Agostino Gemelli IRCCS. Recruiting at 1 site in Italy. Open to participants aged Up to 5 Years. Per ClinicalTrials.gov, last updated 2026-09-08.
Sponsored by Fondazione Policlinico Universitario Agostino Gemelli IRCCS · Observational
Syndromic craniosynostoses (SCS) are rare genetic disorders defined by premature cranial suture fusion, resulting in abnormal craniofacial development and constrained brain growth. These conditions, including Muenke, Saethre-Chotzen, Crouzon, Apert, Pfeiffer and craniofrontonasal syndromes, are typically caused by gain- or loss-of-function variants in key regulators of suture biology such as FGFR1/2/3, TWIST1 and TCF12. Current management is exclusively surgical, relying on early cranial vault remodelling and subsequent reconstructive procedures, which carry substantial risks (e.g. blood loss, infection, re-synostosis) and do not address the underlying molecular etiology.
Recent advances in RNA-based therapeutics have demonstrated the potential of mutation-specific approaches to normalize aberrant osteogenic differentiation in patient-derived cells. However, clinical translation remains limited by inefficient delivery and lack of sustained therapeutic activity. The NAUTILUS project aims to overcome these barriers by developing a non-invasive, ultra-personalized therapeutic platform based on mutation-specific antisense oligonucleotides (ASOs) delivered via a nano-engineered system.
The project will design and validate patient-tailored ASOs targeting the molecular drivers of SCS, with the goal of either silencing pathogenic gain-of-function alleles or restoring physiological expression in loss-of-function contexts. Functional efficacy will be assessed in patient-derived cellular models by evaluating transcript modulation and rescue of protein function. In parallel, NAUTILUS will optimize a nano-ink delivery platform combining PLGA-PEG-bis-sulfone nanoparticles with a GelMA-based hydrogel scaffold, enabling localized, controlled, and sustained ASO release within the cranial suture niche.
Preclinical validation in relevant mouse models will assess the capacity of this platform to delay or prevent pathological suture ossification, ultimately reducing the need for repeated surgical interventions. By directly targeting the genetic basis of disease, NAUTILUS proposes a transformative approach to SCS management. This strategy has the potential to decrease treatment invasiveness, improve clinical outcomes, and enhance quality of life, establishing a precision medicine paradigm for rare craniofacial disorders.
33 studies on the registry are indexed under Acrocephalosyndactylia; 6 are open to participants now.
Browse Acrocephalosyndactylia studies →Fondazione Policlinico Universitario Agostino Gemelli IRCCS is the lead sponsor of 952 studies on the registry; 541 are open to participants now.
Compared within Acrocephalosyndactylia, this study's primary condition as ClinicalTrials.gg classifies it; the registry's first condition term is Craniosynostoses. The counts are of registry records indexed under each term, refreshed daily. How we classify →
Prospective and retrospective paediatric patients, undergoing/underwent corrective surgery for craniosynostosis as per standard of care, will be enrolled at Policlinico Gemelli upon obtain a written informed consent by their parents/legal guardians. Patient selection will be based on genetic evaluations from prior testing conducted as part of their clinical management. A total of 12 patients, with confirmed genetic diagnosis of SCS, with at least 4 different disease-causing mutations, will be selected for the study and cells isolated from their suture samples (surgical waste) analysed.
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Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
For each patient enrolled cranial suture tissue waste and peripheral blood sample will be collected for cell isolation and ASO in vitro testing
ASO design and development
Development of personalized therapeutic ASOs to restore the expression/function of disease-causing genes in patient-derived suture cells.
Time frame: 12 months
Nano-ink development
Formulation of hydrogel-based nano-ink embedded with functionalized PLGA-PEG-bis-sulfone (PPB) NPs able to deliver and release of therapeutic ASOs.
Time frame: 16 months
In vivo validation
Validation of ASO efficiency in murine model tissue
Time frame: 16 months
Started Apr 2026 (actual). Primary completion is estimated for Apr 2027, 12 months after the start.
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