Awareness drives willingness: Results of the ISPAD JENIOUS — PREME T1D project on parents' perspectives on disease‐modifying therapy in T1D

AIMS: To evaluate global caregivers' knowledge, perceptions and willingness to consider disease-modifying therapies for the prevention of clinical onset of type 1 diabetes. METHODS: An online survey was translated into 13 languages and disseminated worldwide from June 2024 to February 2025 to parents and caregivers of youth living with type 1 diabetes. RESULTS: Among 1281 respondents from 50 countries, awareness of available disease-modifying therapies was low, while the perceived importance of delaying clinical disease onset was high. Reflecting this limited knowledge, only 31% expressed unconditional willingness to accept disease-modifying treatments. Willingness to accept treatment was associated with higher educational attainment, residence in high-income countries and prior knowledge of these therapies. Safety concerns, route of administration and limited information were major barriers. CONCLUSION: Informational and socioeconomic barriers to caregivers' awareness and acceptance of disease-modifying therapies may hinder the equitable implementation of preventive immunotherapy, highlighting the need for accessible, multilingual education initiatives.