S. Gainotti, P. Torreri, C. Mannelli, C. Cagnazzo, B. Ficara, and C. Petrini, “Registries or non-pharmacological observational studies? An operational attempt to draw the line and to provide some suggestions for the ethical evaluation of rare disease registries”, Ann Ist Super Sanità, vol. 60, no. 1, pp. 29–36, Jun. 2024.