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CIBMTR has made an effort to include collection of late‐effects data on patients for most of its history, however, the nature and completeness of these data has changed significantly over time. Data on subsequent neoplasms (SN) and fertility outcomes have been collected for many years on all patients. Centers are asked to provide pathology reports to CIBMTR to support the SN diagnosis and subsequent research studies in SNs, however, this can by logistically challenging, especially when SNs are not diagnosed at the original transplant center.

Data on other organ‐specific late effects, including renal, cardiac, metabolic, endocrine, psychiatric and others are collected for patients for whom research level data are collected. These data are complex to collect due to the broad spectrum of late effects and the inability to collect extensive detail on individual events due to the nature of registry reporting. Another serious challenge relates to the fact that these late effects most frequently occur at a time when the patient is no longer regularly (or at all) attending their transplant center and thus under‐ascertainment is highly likely.

In 2018, CIBMTR convened a group of experts to form a late effects task force to develop a strategy for the focused collection of late effects in a subset of patients reporting to CIBMTR. The task force made recommendations in three main areas: subsequent neoplasms, organ‐specific late effects and the inclusion of Patient‐Reported Outcomes (PRO) in routine registry data collection. Many of the recommendations focus on assessing the quality and completeness of late‐effect reporting to CIBMTR and include proposals to compare CIBMTR data to other disease or outcomes specific databases/registries. Enhancing the collection of risk factors, and correlative biologic material was also recommended in some circumstances. Finally, the value of adding assessments of quality of life by direct patient questioning (PROs) was strongly encouraged.

Most research on late effects in CIBMTR is performed in the Late Effects and Quality‐of‐Life (QOL) Working committee. Members of the community can propose studies to the committee which are then voted for through a peer‐review system at the annual meeting. The committee has performed studies addressing a diverse range of topics such as the incidence and risk factors for SN and other late effects after HCT, cardiovascular and metabolic complications, and return to work and QOL in HCT survivors [3,13,14,25‐31].