Donor outcome is an important and integral part of allogeneic HSCT. This has now also been stated in the guiding principles on human cell, tissue and organ transplantation by the WHO. Follow-up of unrelated HSC donors, as required by WMDA, is already well established in individual registries. They report severe adverse reactions and severe adverse product reactions to WMDA through a SEAR/SPEAR database. However, many registries do not have their own electronic databases for systematic donor outcome follow-up.
Data from systematic follow-up of related donors are still scarce, for multiple reasons. One of them is the lack of a common database which would allow entering donor data in a rational and effective way. Today we estimate, from the available (and less than robust) data, about 1 serious adverse reaction (SAR) in 3-5000 donations, and about 1 lethal event in 10,000-20,000 donations in related donors. These incidences might be higher than in volunteer unrelated donors but robust numbers are lacking and definition of SAR may vary between different investigators.
Donor Outcomes Team
- The Donor Outcomes committee has been working since 2012 to build up a database in the EBMT Registry system for donor outcome follow-up for centres and interested registries
- To provide robust data on short- and long-term donor safety
- To develop recommendations for donor eligibility, donor selection and outcome follow-up based on donor health characteristics
- Educational courses
- Protocol review for donor registry studies
- Strong interactions with donor committees from other member societies of WBMT
- Creating of a donor outcome form and preparing for its publication on the EBMT website
- Elaborating a short manual for data managers for the donor outcome form and preparation for its publication
- Contacting centres and registries and motivating them to collaborate