World Marrow Donor Association guidelines for use of HLA nomenclature and its validation in the data exchange among hematopoietic stem cell donor registries and cord blood banks

Abstract

Since the advent of the European Marrow Donor Information System in the first half of the last decade, fully automated data exchange between registry computer systems has been playing an ever-increasing role in the international search for unrelated donors of blood progenitor cells. This exchange, however, was hampered by different local conventions used to present HLA data and complicated by the need to extend the official WHO nomenclature to accommodate the registries' information systems and to cross-validate HLA data obtained with different methods and/or at different loci. The guidelines presented here have been developed by the World Marrow Donor Association to standardize the nomenclature to be used and the validation checks to be applied in the international electronic exchange of HLA-typing data among unrelated volunteer hematopoietic stem cell donor registries and umbilical cord blood banks. Two reference web sites have been designated to maintain and update the approved HLA nomenclature and all the ancillary information needed by the conventions described here.

Estimation of HLA-A, -B, -DRB1 Haplotype Frequencies Using Mixed Resolution Data from a National Registry with Selective Retyping of Volunteers

“…Typing was done using a variety of techniques at varying levels of resolution (Table 1) as the technology evolved over the 20-year history of the NMDP [3][4][5][6]. Many of the intermediate-and highresolution typings of volunteer donors were performed because they were potential matches for a patient ("patientdirected typings").…”

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

“…The challenging coexistence of the serological and allelic HLA nomenclature at various typing resolutions caused by the use of different typing methodologies is addressed explicitly. 1 The consensus of this international collaborative work describes the state of the art in this field and highlights many important design options compatible with the best practice. Furthermore, for the first time, a Information technology and the role of WMDA M Maiers et al common terminology of serological and allelic matching categories has been defined.…”

“…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.…”

An update to the HLA Nomenclature Guidelines of the World Marrow Donor Association, 2012

“…Often, identification of suitable unrelated donors or cord blood units (hereafter, 'donors') is a complex, usually iterative process typically requiring extensive bidirectional communication between the transplant center or search unit and national and/or international donor registries, donor centers or cord blood banks (hereafter, 'registry'). 2,3 In this context, the development and establishment of communication networks like the European Marrow Donor Information System is of major importance. 4,5 This peer-to-peer network currently connects 30 international registriesrepresenting 490% of the global pool of unrelated donorsautomating their interactions in the search process.…”

“…These were compiled by the Information Technology Working Group of the WMDA and first published as 'WMDA HLA Nomenclature Guidelines' in 2007. 2 All related nomenclature and technical information have since been continuously updated on two WMDA-approved reference web sites. 7,8 UPDATE TO THE WMDA HLA NOMENCLATURE GUIDELINES An update to these standards became necessary because of the major revision of the World Health Organization (WHO) HLA nomenclature in April 2010.…”