How to set up ICT in a registry

Setting up an Information Communication Technology (ICT) environment to facilitate the international exchange of haematopoietic stem cell products is complicated, and requires ICT expertise in different areas. At the WMDA, ICT specialists come together to exchange information and harmonise global practices in information technology. Four aspects have been identified as critical:

Software system to facilitate requests

If you are planning to start a registry, you will need to think about the ICT infrastructure. Both donors and patients must be registered in a database. You also need interfaces to the HLA laboratory, donor centres, collection centres, transplant centres, donors and sponsors.  The solution depends on the local situation in your registry and the level of ICT expertise available in your organisation. There are several options:

  • Work with a partner registry which has developed an ICT system especially for registries.
  • Develop the system yourself using the ICT specialists in your organisation or a company you know.
  • Purchase a commercial system.

EMDIS 

The community has set up a communications protocol to ensure reliable communications and data transfer between organisations. This standard communication system is called the European Marrow Donor Information System (EMDIS). If your registry is considering implementing EMDIS, you can find documentation on WMDA Share. EMDIS has defined 30 message types, including preliminary search request, patient updates, search results, typing requests and results, notification of sample arrival date and sample testing results, and infectious disease markers requests and results.

ICT experts from the registries review user needs every year and inform them about the timetables and feasibility requirements. Based on these decisions, an implementation package is developed which is rolled out annually by participating registries.

Search algorithm

One of the most complicated components of a registry ICT system is its matching algorithm. The goal of this algorithm is to identify potential matches that express the same histocompatibility antigens as the patient receiving the transplant. HLA data are very complex and registries are heterogeneous in terms of the HLA loci typed, the typing resolution and typing methodologies used. WMDA has validated matching programmes which provide reference results that can be used to validate future matching algorithms and thus improve the quality of the global donor search process. The match programme of the Search & Match Service was part of this validation project. You can read more about this in the published article.

Hardware infrastructure

Hardware for information systems can differ depending the size of the registry, the registry’s financial situation, or on how the registry is organised. It is important to have backup systems, backup and disaster recovery plans and documentation that describe the key computer systems.