with a short history of HCT. Several studies have been performed in countries or regions with a long HCT history, including studies to address incidence and risk factors or outcomes of long‐term complications such as secondary malignancies after HCT, or long‐term effects of HCT for recipients in terms of quality of life and returning to work challenges [44–53].
Future plans
Within APBMT, there are still many countries/regions where long‐term follow‐up after HCT is not properly performed according to the recommended guidelines. The barriers that impede the implementation and promotion of the long‐term follow‐up are varied significantly among the countries/regions. APBMT will continue to work with multidisciplinary transplant team members including community resource to increase the awareness of long‐term survivorship in HCT, and will solve the barriers by geographical‐based approaches. This effort will facilitate further data collection in regards to late effects within the APBMT registry.
The Registry of the Eastern Mediterranean Blood and Marrow Transplantation Group (EMBMT)
Mahmoud Aljurf and Feras Alfraih
Introduction to the registry
The Eastern Mediterranean Blood and Marrow Transplantation (EMBMT) Group was established in 2008 as a cooperative platform for physicians, scientists and healthcare workers from institutions in the WHO designated Eastern Mediterranean Region (EMRO) with the goal of sharing experience, initiation of cooperative trials and establishing common strategy to achieve optimization in the field of HCT. The group's aim is to promote all aspects of patient care, academic and research activities associated with HCT in the region which includes knowledge of the trends, patterns and status of HCT in Eastern Mediterranean (EM) countries [54].
The registry has member centers from 14 countries in Gulf Cooperative Council, Levant, North Africa and Near East. These countries are Saudi Arabia, Kuwait, Oman, Qatar, Jordan, Syria, Lebanon, Iran, Iraq, Pakistan, Egypt, Tunisia, Algeria and Morocco [55].
The Head Office of the EMBMT is hosted at the King Faisal Specialist Hospital and Research Center in Riyadh, Saudi Arabia.
The organization is active in holding periodic workshops focusing on data management, quality management and HCT‐related research in general. There is a very active collaboration between the institutions particularly in relation to patient care.
Data collection
EMBMT central office currently collects data from 38 centers in the EMRO region individually on an annual basis.
The data submitted from participating centers includes type of transplant, indication, type of conditioning, donor type and source of stem cells. The registry publishes HCT regional performance data every two years. Additionally, the registry does retrospective studies on rare diseases that are more prevalent in the EMRO such as bone marrow failure. During the last 10 years, EMBMT had made several publications related to HCT in the EMRO region. Great heterogeneity exists in the capabilities of the reporting center to collaborate on data [56].
At present, approximately 2500 HCT procedures are done in the EMRO region annually with the majority being of allogeneic type (55–60%). This is because of the wider availability of related donors with the large family size that exists in most of the countries and the young median age of the population leading to more pediatric cases, obviously with more allogeneic indications.
Late Effects Specific Data Collection
Approximately 30% of the reporting centers are capturing outcome data. These centers are also reporting data to other international registries like CIBMTR and EBMT.
At present, late effects and outcome data are not routinely requested or obtained by EMBMT from participating centers. Late effects are of particular importance in the EMRO region as a large proportion of the patients are from pediatric ages with highly curable malignancies and inherited disorders. Few studies have been conducted on long‐term outcome of bone marrow failure syndromes including Fanconi Anemia and Dyskeratosis Congenita and more are being done.
Future plans
EMBMT registry is in the process of adding a few items that will capture limited but important information on outcomes and late effects data such as survival and GVHD.
If this demonstrates success and feasibility, the registry will continue to slowly but steadily increase the items to be included in reporting.
References
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