Information technology and the role of WMDA in promoting standards for international exchange of hematopoietic stem cell donors and products

Abstract

Nearly half of the unrelated hematopoietic SCTs facilitated worldwide involves an exchange of products between countries. The process is information intensive and requires coordination through regional hubs of complex data transactions of demographic, clinical and genetic information, laboratory samples and results. Each registry has developed its own unique systems for representing data and process leading to transplantation. Electronic data exchange for search information as well as for requesting and providing subsequent services has an ever-increasing role in national and international searches for unrelated volunteer donors of hematopoietic progenitor cells. To eliminate errors, ambiguities and incompatibilities in the transmission of HLA data between stem cell donor registries and cord blood banks, the Information Technology and Quality Assurance Working Groups of the WMDA have developed guidelines for the nomenclature of HLA typing assignments. 1 These guidelines are firmly based on the nomenclature developed by the World Health Organisation Nomenclature Committee for factors of the HLA System 2 and uniformly accepted by the HLA community and on the requirements for presenting and condensing HLA data within the format of the registries' information systems.The WMDA HLA guidelines consist of a set of welldefined rules describing how a valid phenotype and a valid typing result may be presented with regard to the structure and contents of individual data fields and cross-checks applied between given fields. For the information technology (IT) specialists, these rules can be regarded as a specification of a validation routine to be applied to all incoming HLA data. Such a routine might include review for valid letter codes and basic rules for assignments and cross-checks between serological and allelic assignments for HLA.The NMDP (http://bioinformatics.nmdp.org/HLA/ Allele_Codes/Allele_Code_Lists/index.html) allele code system was developed to provide a standard shorthand for reporting lists of possible alleles (for example, DRB1*01AD ¼ DRB1*0101 or DRB1*0104). Owing to the vast polymorphism of HLA and the need for compact representation of ambiguities, there have been over 65 000 of these alphabetical codes defined. With 50-100 of these codes created in a typical day, it is critical for global communication between registries to use an up-to-date shared reference for this sort of information.In the course of the standardization of the electronic exchange of HLA data, two reference web sites (http:// hla.alleles.org/wmda/index.html and http://hla.alleles.org/ nomenclature/nomenclature_2009.html) 3 have been designated to maintain and update the approved HLA nomenclature and all the ancillary information needed by the conventions of the guidelines. In addition, a compre-

Computer Algorithms in the Search for Unrelated Stem Cell Donors

“…The WMDA Information Technology Working Group provides validation sets of patients and donors that are used for matching trials and comparison of results with expected outcomes [2, 20]. Algorithms that do not use simple preselection approach, but use more complex preselection, have to be validated for completeness.…”

Algorithm for donor selection in 2011

“…Over the past 20 years, International Donor Registries have progressively grown and more than 16 million VUDs are presently available worldwide [7 , 18,19]. Overall, about 60% of patients of northwest European origin may identify a 10/10 allele-matched VUD, but this percentage is greatly reduced when the patients express an unusual allelic linkage, an uncommon haplotype or belong to a minor ethnicity (e.g.…”

“…The organization Bone Marrow Donors Worldwide (BMDW) is able to provide this important information through a specific 'matching program' [18,[27][28][29]. The organization Bone Marrow Donors Worldwide (BMDW) is able to provide this important information through a specific 'matching program' [18,[27][28][29].…”

Untitled

“…До не дав не го вре мени «зо ло тым стан дар том» со вмес ти мос ти пары паци ент-до нор счи та ли со впа де ние по де ся ти аллелям ло ку сов HLA-A, HLA-B, HLA-C, HLA-DRB1 и HLA-DQB1 (10/10 HLA-со вмес ти мые па ци ен ты). Со вер ше нство ва ние пред став ле ний о чрез вы чай ном по ли мор физ ме HLA-сис те мы и вы яв ле ние новых ал ле лей не из беж но умень шат ко ли чес тво до сих пор не из вес тных фак то ров гис то сов мес ти мос ти [1] и их вли я ние на ис ход транс план та ций ал ло ген ных СК. Нап ри мер, по ка за но, что ло кус HLA-DPB1, имеет шесть ги пер ва ри а бель ных учас тков, спо собных пораз но му вли ять на ис ход транс план та ции не родствен ных до нор ских ге мо по э ти чес ких кле ток [2][3][4][5][6][7].…”