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Recruitment of Marrow Donors in the Non-governmental Sector of the Republic of North Macedonia, 2022

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BACKGROUND: Bone marrow transplantation is a well-established lifesaving treatment procedure for many patients with various diseases, such as blood cell cancers (leukemia), some severe hematological diseases (aplastic anemia) and some rare diseases, as well as immune deficiency disorders. Allogeneic hematopoietic stem cell transplantation (HSCT) represents a potentially curative therapy for various hematologic disorders and even the only curative treatment for some diseases (e.g., myelodysplastic syndromes). As an alternative donor strategy, in patients lacking a human leukocyte antigen-matched donor or haploidentical donor, mismatched unrelated donors offer the option of using HSCT in this group of patients. Since the establishment of the first registry in the world for recruitment of unrelated bone marrow donors, the number of newly formed registries has increased over the years. In our country, in addition to the government-funded registry, housed at the Institute of Immunobiology and Human Genetics, Faculty of Medicine in Skopje, an additional non-governmental registry was established, Scientific Foundation SPIROSKI - Marrow Donor Registry (MK-SFSMDR). This will contribute to the increase of the number of newly registered donors in the Republic of North Macedonia and will be a great benefit for the patients searching for a bone marrow transplantation. AIM: We aimed to present the establishment of the first MDR in the non-governmental sector of the Republic of North Macedonia and the recruitment strategies of new donors. METHODS: The core activity was the creation, realization, and implementation of the Marrow Donors Recruitment Program. The constructed program for increasing the awareness of the population about HSCT and the importance of becoming a marrow donor encompasses the following activities: (1) creation of a web portal for bone MDR in English, Macedonian, and Albanian language; (2) application of standards from the World Marrow Donor Association for educational material preparation and informed consent creation; (3) composing printed and electronic materials for recruitment activities; (4) organization of public debates for marrow donation in governmental and non-governmental sectors; (5) inclusion of students and other non-governmental organizations for recruitment and registration of marrow donors; and (6) submission the obtained results from Macedonian donors and the donors from other communities (Albanians, Roma, Serbs, Turks, Vlachs, and others) in the database for marrow donors. RESULTS: In 2022, 988 submissions from marrow donors were registered, from which 678 (68.62%) were females and 310 (31.37%) were males. The biggest number of submissions for marrow donors are in the age group of 26–40 years (567 or 57.38%), followed by the age group of 18–25 (270 or 27.32%) and the age group of 41–55 (151 or 15.28%). The most efficient method for new submissions was through social networks, 538 or 54.45% out of 988 registered donors. The second was through word of mouth (200 or 20.24%), the third was onsite marrow donor recruitment actions (145 or 14.68%), followed by information from the websites (19 or 1.92%), and other (86 or 8.70%). From the total Macedonian population (2,062,044), we were able to recruit 988 marrow donors, which is 0.048% of the population. The biggest recruitment percentage was in the Skopje region (0.067%), followed by the Pelagonia region (0.059%) and the Southwest region (0.043%). The lowest participation was in the Polog region (0.011%). The biggest percentage of recruited marrow donors (988) were Macedonians (94.13%), and the rest of them were from the minorities: Albanians (1.92), Turks (0.71%), Roma (0.1%), Croats (0.2%), Bosniaks (0.51%), Vlachs (0.81%), Serbs (1.21%), Macedonian Muslims (0%), and others (0.4%). CONCLUSION: With the establishment of the SFS-MDR (MK-SFSMDR), one of the goals of SFS was achieved, which, together with the publication of scientific journals, enables and contributes to the scientific research in the field of the main tissue-compatible complex and transplantation of cells, tissues, and organs. The results will be used by patients who need bone marrow treatment in our country, in neighboring countries, and around the world.
Title: Recruitment of Marrow Donors in the Non-governmental Sector of the Republic of North Macedonia, 2022
Description:
BACKGROUND: Bone marrow transplantation is a well-established lifesaving treatment procedure for many patients with various diseases, such as blood cell cancers (leukemia), some severe hematological diseases (aplastic anemia) and some rare diseases, as well as immune deficiency disorders.
Allogeneic hematopoietic stem cell transplantation (HSCT) represents a potentially curative therapy for various hematologic disorders and even the only curative treatment for some diseases (e.
g.
, myelodysplastic syndromes).
As an alternative donor strategy, in patients lacking a human leukocyte antigen-matched donor or haploidentical donor, mismatched unrelated donors offer the option of using HSCT in this group of patients.
Since the establishment of the first registry in the world for recruitment of unrelated bone marrow donors, the number of newly formed registries has increased over the years.
In our country, in addition to the government-funded registry, housed at the Institute of Immunobiology and Human Genetics, Faculty of Medicine in Skopje, an additional non-governmental registry was established, Scientific Foundation SPIROSKI - Marrow Donor Registry (MK-SFSMDR).
This will contribute to the increase of the number of newly registered donors in the Republic of North Macedonia and will be a great benefit for the patients searching for a bone marrow transplantation.
AIM: We aimed to present the establishment of the first MDR in the non-governmental sector of the Republic of North Macedonia and the recruitment strategies of new donors.
METHODS: The core activity was the creation, realization, and implementation of the Marrow Donors Recruitment Program.
The constructed program for increasing the awareness of the population about HSCT and the importance of becoming a marrow donor encompasses the following activities: (1) creation of a web portal for bone MDR in English, Macedonian, and Albanian language; (2) application of standards from the World Marrow Donor Association for educational material preparation and informed consent creation; (3) composing printed and electronic materials for recruitment activities; (4) organization of public debates for marrow donation in governmental and non-governmental sectors; (5) inclusion of students and other non-governmental organizations for recruitment and registration of marrow donors; and (6) submission the obtained results from Macedonian donors and the donors from other communities (Albanians, Roma, Serbs, Turks, Vlachs, and others) in the database for marrow donors.
RESULTS: In 2022, 988 submissions from marrow donors were registered, from which 678 (68.
62%) were females and 310 (31.
37%) were males.
The biggest number of submissions for marrow donors are in the age group of 26–40 years (567 or 57.
38%), followed by the age group of 18–25 (270 or 27.
32%) and the age group of 41–55 (151 or 15.
28%).
The most efficient method for new submissions was through social networks, 538 or 54.
45% out of 988 registered donors.
The second was through word of mouth (200 or 20.
24%), the third was onsite marrow donor recruitment actions (145 or 14.
68%), followed by information from the websites (19 or 1.
92%), and other (86 or 8.
70%).
From the total Macedonian population (2,062,044), we were able to recruit 988 marrow donors, which is 0.
048% of the population.
The biggest recruitment percentage was in the Skopje region (0.
067%), followed by the Pelagonia region (0.
059%) and the Southwest region (0.
043%).
The lowest participation was in the Polog region (0.
011%).
The biggest percentage of recruited marrow donors (988) were Macedonians (94.
13%), and the rest of them were from the minorities: Albanians (1.
92), Turks (0.
71%), Roma (0.
1%), Croats (0.
2%), Bosniaks (0.
51%), Vlachs (0.
81%), Serbs (1.
21%), Macedonian Muslims (0%), and others (0.
4%).
CONCLUSION: With the establishment of the SFS-MDR (MK-SFSMDR), one of the goals of SFS was achieved, which, together with the publication of scientific journals, enables and contributes to the scientific research in the field of the main tissue-compatible complex and transplantation of cells, tissues, and organs.
The results will be used by patients who need bone marrow treatment in our country, in neighboring countries, and around the world.

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