HELIOS- Working Group 2 Report on CRF Hemoglobinopathies

This report provides an overview of existing Case Report Forms (CRFs) relevant to the management and study of hemoglobinopathies, including thalassemia and sickle cell disease. While not developed by HELIOS, members of the HELIOS network have contributed to the creation of these CRFs. The document explains what CRFs are, how they are designed and standardized, and offers guidance on how clinical and healthcare centers can adopt and implement them to support harmonized data collection and improve care coordination. The mentioned CRFs have been endorsed by the HELIOS COST Action. The report was produced by the working group leaders Dr Anna Collado Gimbert and Dr Andreas Glenthoej.