Mission Statement:

To provide a forum for the discussion of IT issues relevant to stem cell donor registries and to provide a forum for the agreement on HLA IT standards for stem cell donor registries.

Interesting articles:

• Measuring Ambiguity in HLA Typing Methods

Projects:

• WMDA HLA Guidelines Document, version 2 (submitted for publication)
• IDAWG: the Silver standard: immunogenetics.org
• Matching validation (most discrepancies in DNA-serology mapping)
• Global contact management database
• Security and data privacy (e-mail encryption)
• 16th IHIWS Workshop (comparison, validation and improvement of tools for HLA haplotype frequency analysis specifically designed to address issues of registry datasets)
• IT strategic planning

Recommendations from the Information Technology Working Group (ITWG):

HLA NOMENCLATURE AND MATCHING ALGORITHM

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. These guidelines are firmly based on the nomenclature developed by the World Health Organisation Nomenclature Committee for factors of the HLA System 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. More information you can read on the search algorithm webpage...

BONE MARROW DONORS WORLDWIDE (BMDW)

The BMDW is a voluntary collaborative effort of stem cell donor registries and cord blood banks whose goal is to provide centralized information on the HLA phenotypes and other relevant data of unrelated stem cell donors and CBUs, and to make this information easily accessible to the physicians of patients in need of a hematopoietic stem cell transplant.

The BMDW started as an initiative of the Immunobiology Working Party of the European Group of Blood and Marrow Transplantation (EBMT) in 1988. In February 1989, the first edition was distributed, which contained the donor files of eight registries with a total of 155 000 volunteer stem cell donors.

Almost all members of BMDW are also members of WMDA. Because of the shared membership and shared interests, BMDW is actively participating in the ITWG projects. A representative of the ITWG also participates in the BMDW Advisory Committee meeting, which strengthens both organizations.

EUROPEAN MARROW DONOR INFORMATION SYSTEM (EMDIS)

Initiated in 1992 as a European Union Project in the 3rd Framework Programme ‘Advanced Informatics in Medicine (AIM)’, the European Marrow Donor Information System (EMDIS) has become the standard platform for computer-based registry communication today. The aim of EMDIS is to establish a single virtual international donor registry allowing search coordinators to get the same information and services on international donors as accurately, timely and easily as from their own national donors. The scope of operation covers all aspects of an unrelated donor search from the preliminary search to the donor workup. Technically, EMDIS defines an open specification of a protocol for the electronic communication among registries. Hence, EMDIS is implemented as an asynchronous peer-to-peer network connecting distributed, heterogeneous databases.

Membership of EMDIS is free of charge. The community provides documentation, status information, software tools, support and a project management platform. EMDIS usually has meetings during the WMDA meetings.

Reported projects:

• Recommendation for datafields
• Information Technology White Paper

Presentations: slides presented at the WMDA general membership meeting (November 2012)

Minutes: link to the minutes of the previous meetings (only available for WMDA members)

Chair: Martin Maiers (United States)

Vice-chair: Jack Bakker (The Netherlands)