A Worldwide Perspective On Clinical Characteristics And Treatment Of Youth With Monogenic Diabetes In The SWEET Registry

Abstract Aims To characterize youth with monogenic diabetes worldwide in the SWEET database and define trends in clinical care and outcomes. Methods Youth with monogenic diabetes, between ages 0-21 years, from 44 worldwide centers in the SWEET registry divided into global regions were studied in this retrospective analysis. This included 690 youth with data at diabetes diagnosis and/or follow up at 1 year and 214 patients with data at both time points. Demographics, comorbidities, and treatment were evaluated. Results Globally, mean age and hemoglobin A1c (HbA1c) at diagnosis were 10.1 years (SD 4.57 years) and 6.9% (52 mmol/mol) (SD 1.7%, 18 mmol/mol) respectively. At 1 year follow up, mean HbA1c decreased by 0.4%. Average BMI at diabetes diagnosis was in normal range (WHO BMI SDS 0.31). At diabetes diagnosis, 3.6% presented in diabetic ketoacidosis (DKA). Seven percent were treated with oral anti-diabetes medications or GLP-1 receptor agonists at diabetes diagnosis, increasing to 15.3% at follow up. Overall, treatment with insulin increased by 10% at follow up. Conclusions Worldwide, patients with monogenic diabetes typically present during late childhood/early adolescence with mild elevation in HbA1c, normal BMI, and lack of DKA. Regional differences in demographics and treatment modalities highlight heterogeneity in presentation and management of monogenic diabetes, impacting clinical care.