Capturing attitudes towards research and data sharing in down syndrome (CARDS-DS): Piloting a novel parent-report measure

Open science initiatives aim to accelerate research through data sharing. While prior research has explored public attitudes toward genomic data sharing, perspectives on sharing other data types, such as neuroimaging data, remain largely unexplored. To address this gap, we developed the CARDS-DS (Capturing Attitudes toward Research and Data Sharing in Down Syndrome) questionnaire, a novel survey designed to assess parental attitudes toward open-access data sharing in large-scale Down syndrome (DS) research. CARDS-DS items were adapted from existing surveys or newly written to fit the context. We conducted interviews to refine the survey items with 14 parents of infants with DS enrolled in a longitudinal neuroimaging study. Responses were analyzed using a structured qualitative coding framework and informed modifications to the final questionnaire. The finalized 35-item CARDS-DS survey encompasses five domains: (I) benefits of research participation, (II) concerns about participation, (III) attitudes toward data sharing, (IV) decision-making in research, and (V) access to research results. Parents in this pilot study expressed strong intrinsic motivation to participate in research, citing benefits for future generations. Most were comfortable sharing medical and behavioral data, but expressed concerns about videos, photographs, and genetic data due to privacy risks and potential misuse. Trust in researchers played a critical role in shaping parental attitudes. In future work, CARDS-DS can serve as a tool for assessing attitudes of large samples of participants toward data sharing in DS research, and has potential to be modified for use with other research populations.