Head & Face Medicine · 6 authors, 4 centres
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This paper describes the design and launch of a new international registry for patients with Robin sequence to collect data on diagnosis, treatment, and long-term outcomes. The registry aims to fill knowledge gaps by enabling comparisons of different treatment approaches for this rare congenital condition.
The study presents the protocol for a prospective, observational, multicenter, multinational registry for patients with Robin sequence (RS), a congenital condition characterized by micrognathia, glossoptosis, and airway obstruction. Enrolment began in January 2022, with the first patient included that month. The registry aims to collect routine clinical data on disease characteristics, treatment approaches, and outcomes including neurocognition, growth, speech, and hearing. It is designed to follow patients longitudinally to assess long-term developmental status and quality of life. The authors note this is the first registry dedicated to RS that includes all patients irrespective of treatment and collects outcomes data. A key limitation is that as it collects routine clinical data, data quality and completeness may vary across centers, potentially introducing bias. The registry is intended to provide urgently demanded data to inform personalized treatment and clinical guidelines, but no interim results are yet available as the study is ongoing.
