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• W2072580800 abstract "Background. The purpose of this study is to identify the following topics: (1) what information regarding the recipient’s medical history European Donor Centers (EDC) define as essential; (2) frequency of recipient follow-up (FU) information to EDCs; and (3) information flow to the donor regarding the recipients medical history posttransplantation. Methods. A questionnaire was faxed to 38 EDCs. Of these, 21 (55.3%) responded. One of these 21 EDCs declined to answer, and another had delegated the FU program to another national center, so the results are based on the 19 EDCs that completed the questionnaire. Results. Sixteen of the 19 EDCs (84.2%) had a recipient FU questionnaire. The following analysis is based on the answers from the 16 EDCs with a FU questionnaire.The frequency of FU information by days (D) post SCT was D 30, 4 EDCs; D 60, 1 EDC; D 90, 6 EDCs; D 100, 3 EDCs; D 120, 2 EDCs; D 180, 8 EDCs; 1 year, 13 EDCs; yearly, 11 EDCs. Fourteen of the 16 (87.5%) EDCs with a FU program used the same questionnaire for all FU requests, and 6 (37.5%) of the 16 EDCs redesigned their FU questionnaire according to research projects. The EDCs’ frequency of follow-up information was based on national standards in 4 (25%), international standards in 7 (43.8%), both national and international standards in 2 (12.5%), and other standards in 3 (18.8%). The donor access to FU information regarding the recipients condition was given as follows: no information given in 3 (17.8%), information automatically given to the donor in 3 (18.8%), information given on donor request in 8 (50%), information given by the collection center in 1 (6.3%), and other in 1 (6.3%). Changes in the patient’s condition are not reported to the donor in 13 (81.2%), are reported to the donor in 1 (6.3%), and are reported only on request from the donor in 5 (31.3%). The donor is not informed if the patient dies in 8 (50%), the donor is informed in 3 (18.8%), and the donor is informed only on request in 5 (31.3%). Twelve EDCs gave information on the content of their FU questionnaire. The most frequent questions asked are regarding date of transplantation and survival status in 12 (100%); date and cause of death, Lansky/Karnofsky score in 11 (91.7%); AGvHD, recurrence or relapse of disease in 10 (83.3%); engraftment, retransplantation/DCI in 9 (75%); and chronic GvHD in 8 (66.7%). Conclusions. Because only 55.3% of the EDCs participated in this study. the results should be interpreted with caution. Most EDCs have a recipient FU program, but there is no agreement among EDC on dates of the FU information and by what standards this information should be provided. Some 82% of the EDCs provide information to the donor regarding the recipient’s condition." @default.
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• W2072580800 title "Core information reported to donor centers after allogeneic stem cell transplantation (SCT)" @default.
• W2072580800 doi "https://doi.org/10.1016/j.bbmt.2004.12.324" @default.
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