Patient engagement in hematopoietic stem cell transplantation and cell therapy: a survey by the EBMT patient engagement task force & transplantation complications working party

The EBMT (European Blood and Marrow Transplantation Society) aims to connect patients, the scientific community, and other stakeholders to improve hematopoietic stem cell transplantation and cellular therapy outcomes. We performed a cross-sectional online survey to understand the perceptions regarding Patient Reported Outcomes (PROs) and Patient Active Involvement in Research (PAIR) in over 800 stakeholders ( n = 813). Patients ( n = 278) and health care professionals (HCPs) ( n = 351) were compared. We observed high openness for EBMT PRO collection ( n = 680, 84.5% across stakeholders’ groups; patients n = 256, 93.1% versus HCPs n = 273, 78.4% [ p