Читать книгу Blood and Marrow Transplantation Long Term Management - Группа авторов - Страница 29

CIBMTR is currently implementing the recommendations of the late effects task force. An IRB‐approved PRO protocol is in place (August 2019) to begin the collection of PROs. An important recommendation of the task force was to explore mechanisms to enhance patient engagement in later years following transplant, especially if they have left the care of the transplant center, to continue to understand the physical, emotional and social issues that they face. Such engagement, through direct patient contact, may also enhance the collection of late effects such as SN and fertility outcomes. Finally, CIBMTR is also transforming the way in which medical record/electronic data are collected to reduce the burden on transplant center staff and maximize the benefits of advances in IT systems and electronic data records.