General information for new registries

Participating registries are expected to adhere to the Standards, Guidelines and Recommendations of the World Marrow Donor Association (http://www.worldmarrow.org).

The participating cord blood banks are expected to adhere to the NETCORD/FACT Standards or equivalent standards.

Stem cell donor registries or cord blood banks need to be fully operational before contacting the BMDW Office regarding future participation in BMDW.

Criteria for registries to be mentioned as a future registry in BMDW:

• The registry must have at least 50 HLA typed unrelated stem cell donors or cord blood units.
• The registry must be operational.
• The registry must be willing and able to provide hematopoietic stem cell products from unrelated donors or cord blood units to transplant centres abroad.
• The registry must indicated that it is willing to start working on entering its donors or cord blood units in BMDW.

1. A registry is an organisation that supplies the phenotypes and other data concerning stem cell donors or cord blood units to BMDW.
2. Annually each participating registry pays an amount depending on the number of donors and cord blood units submitted to BMDW. See the fee table below.
3. The registry is authorised to allow TC's from the region to use facilities of BMDW (primarily on-line match programs). This does not lead to an extra charge.
   Note: NMDP's region is the entire USA.
4. BMDW can allow TC's to use BMDW's facilities without the intervention of the registry. In this case an annual fee is charged (EUR 670.00).
5. A registry supplies the phenotypes and other data concerning stem cell donors and cord blood units in separate files. This does not lead to an extra charge.
6. A smaller registry in country A may supply its donor data through a larger registry in country B. This cooperative effort will be regarded as one registry. One full annual fee is charged for the cooperative effort.
   Only the larger registry, actually supplying the data, will have registry-access to facilities of BMDW. The smaller registry can be allowed to use facilities of BMDW. For this an extra annual fee will be charged (EUR 670.00).

The BMDW data extraction is available for participating registries. The fee for the data download is based on the size of the registry - see the table below. Fees are implemented beginning in the calendar year 2011.

If you would like to join BMDW as a participating registry, please provide details of your registry (number of donors or cord blood units, contact details, etc.). Your first step should be to send an email to:

Machteld Oudshoorn, PhD

Chairman of the Editorial Board

Europdonor Foundation

Plesmanlaan 1b

2333 BZ Leiden

The Netherlands

Fax: +31-71-5210457

Email: BMDW --at-- Europdonor --dot-- NL

Please provide details of your registry (number of donors or cord blood units, contact details, etc.)

In November 2003 the BMDW Advisory Committee (BMDW-AC) was installed by the BMDW Editorial Board (BMDW-EB). The current members are:

• Torstein Egeland (Chair) - Norwegian Bone Marrow Donor Registry, Oslo, Norway
• Dennis Confer - National Marrow Donor Program (NMDP), Minneapolis MN, USA
• Jeremy Chapman - Australian Bone Marrow Donor Registry, Sydney, Australia
• Steven Marsh (Anthony Nolan, United Kingdom)
• Cristina Navarrete - British Bone Marrow Registry, Bristol, UK
• Hans-Georg Rist - Zentrales Knochenmarkspender-Register Deutschland (ZKRD), Ulm, Germany
• Edward Yang - Buddhist Tzu Chi General Hospital Stem Cells Center, Hualien City, Taiwan

The main tasks of the committee are:

• To provide an initial vetting of proposed policy changes
• To contribute to the development of new policies
• To review annual operating budgets
• To contribute to Editorial Board meeting agendas
• To provide or request background information on issues raised

All participating registries are expected to adhere to the standards of the World Marrow Donor Association. However the Editorial Board of BMDW or Europdonor Foundation do not have the intention and the tools to exercise site visits or to verify such WMDA compliance of the participating stem cell donor registries or the participating cord blood registries. Therefore the Editorial Board of BMDW and Europdonor Foundation cannot be held liable in case a participating registry is not acting according to the WMDA Standards.

The on-line facilities of BMDW can be used by transplant centres and search co-ordinators. Authorisation is given primarily by the national hubs. People who are not professional members of the BMT community will NOT be authorised. Click for more information on authorization for the on-line facilities.

BMDW - Bone Marrow Donors Worldwide * Plesmanlaan 1b * 2333 BZ Leiden * The Netherlands