Late effects specific data collection
APBMT countries/regions are characterized by its diversity in terms of the activity of HCT, social infrastructure, regulation for medical care and research, and the age of HCT. Thirteen countries/regions started HCT prior to 2000, with Japan, Singapore, Taiwan, and the Republic of Korea starting in 1986 [43]. Bangladesh, Myanmar, Sri Lanka, and Nepal started HCT from 2014. Establishment and dissemination of HCT and improvement of short‐term survival outcomes tend to be listed as priority issues in countries 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
1 1. Aljurf M, Rizzo JD, Mohty M, et al. Challenges and opportunities for HSCT outcome registries: perspective from international HSCT registries experts. Bone Marrow Transplant. 2014; 49(8):1016–1021.
2 2. Horowitz M. The role of registries in facilitating clinical research in BMT: examples from the Center for International Blood and Marrow Transplant Research. Bone Marrow Transplant. 2008; 42(Suppl 1):S1–S2.
3 3. Bhatt NS, Brazauskas R, Tecca HR, et al. Post‐transplantation employment status of adult survivors of childhood allogeneic hematopoietic cell transplant: A report from the Center for International Blood and Marrow Transplant Research (CIBMTR). Cancer. 2019; 125(1):144–152.
4 4. Eapen M, Raetz E, Zhang MJ, et al. Outcomes after HLA‐matched sibling transplantation or chemotherapy in children with B‐precursor acute lymphoblastic leukemia in a second remission: a collaborative study of the Children's Oncology Group and the Center for International Blood and Marrow Transplant Research. Blood. 2006; 107(12):4961–4967.
5 5. Eapen M, Rocha V, Sanz G, et al. Effect of graft source on unrelated donor haemopoietic stem‐cell transplantation in adults with acute leukaemia: a retrospective analysis. Lancet Oncol. 2010; 11(7):653–660.
6 6. Verneris MR, Eapen M, Duerst R, et al. Reduced‐intensity conditioning regimens for allogeneic transplantation in children with acute lymphoblastic leukemia. Biol Blood Marrow Transplant. 2010; 16(9):1237–1244.
7 7. Zhang MJ, Davies SM, Camitta BM, et al. Comparison of outcomes after HLA‐matched sibling and unrelated donor transplantation for children with high‐risk acute lymphoblastic leukemia. Biol Blood Marrow Transplant. 2012; 18(8):1204–1210.
8 8. Hussein AA, Hamidieh AA, Elhaddad A, et al. First report of pediatric hematopoietic stem cell transplantation activities in the eastern mediterranean region from 1984 to 2011: on behalf of the pediatric cancer working committee of the eastern mediterranean blood and marrow transplantation group. Bone Marrow