Tools to operate a registry
WMDA has developed several tools to help organisations facilitating search requests which may be received from national transplant centres or other registries. Search requests must be fulfilled in line with the legal requirements of the country where the registry is located. If the donor or patient is from abroad, then international standards should be complied with. WMDA has several services to assist registries to facilitate search requests:
Sometimes you do not know the organisation you need to contact to request a blood sample from your potentially best match. WMDA has developed an information platform where you can find operational information for each organisation listing either donors or cord blood units for international search. Each organisation has its own webpage which is maintained by the organisation itself. On this webpage, you will find the organisation’s address and contact information, operational information and any regulatory
requirements. If you are a WMDA member and have access to WMDA Share, you can also access the emergency contact information for this organisation.
Organisation closure agenda
WMDA collects information about national or regional holidays every year and posts it in a Google calendar. You can easily add this information to your own calendar to see when registries are closed and therefore unable to respond to your requests. Find here the organisation closure agenda.
WMDA has developed form templates which registries can use throughout the search process, from the initial search through to the delivery of stem cells to a transplant centre. By adding your organisation’s logo, you have an internationally accepted form which you can use for your own operations. You can find all WMDA form templates, in a fillable and saveable PDF format, here.
WMDA International Emergency Task Force
This task force provides assistance to WMDA member registries that request support in responding to incidents that are not routine. Incidents that impact their operations or that cannot be easily resolved on their own – for example, if there is a catastrophic impact on the organisation’s facilities, staff or equipment. You can request assistance, here.
Performance of registries
The WMDA has defined key performance indicators for haematopoietic stem cell donor registries. These KPIs are based on the WMDA annual report and the HLA discrepancy report. The objective is to incite organisations to improve their processes by providing target values that should be achievable for their organisation. Improving the performance of a hematopoietic stem cell donor registry means faster services for recipients and insures continuous high quality in the search for a suitable match and the collection of hematopoietic stem cell products. You can download here the defined KPIs.
You can communicate with other organisations using conventional methods, such as phone, email and fax. In addition, member registries have developed a peer-to-peer communication system to facilitate requests for blood samples. The European Marrow Donor Information System (EMDIS) is an open protocol for electronic communication between registries. You can find documentation, status information, software tools, support and a project management platform on WMDA Share.