Hematopoietic stem cell transplantation (HSCT) is a medical procedure in which diseased bone marrow is replaced by highly specialized stem cells that develop into healthy bone marrow. Since Thomas et al. reported the use of allogeneic HSCT in children and adolescents, there has been substantial progress and success of HSCT for treating blood-related disease [1,2]. Better understanding of transplantation biology and brilliant advances in the HLA related field led to the development of non-myeloablative stem cell, peripheral blood stem cell (PBSC), and umbilical cord blood transplantation [3]. HSCT from HLA-matched siblings or unrelated donors is one of the options for patients requiring a transplant. The National Marrow Donor Program of US reported that only about 30% of patients are likely to have matched sibling donor [4]. As there are relatively fewer registrants in Korea due to the social trend towards low birth rates resulting in the formation of nuclear family, an urgent need for donors to supply stem cells for patients requiring transplants has ensued.

The registrant recruitment and coordination program for unrelated HSCT in Korea was started in 1994, when the Catholic Hematopoietic Stem Cell Bank (CHSCB) and the Korean Marrow Donor Program (KMDP) were founded. A total of 5,824 bone marrow transplants from sibling donors, and 3,173 bone marrow/PBSC transplants from unrelated donors have been reported since 2010 [5]. Although medical advances in bone marrow transplantation techniques and immunosuppressive medications have dramatically increased the number of unrelated transplants each year [6], more potential donors should be recruited, registered, and coordinated through increased HSCT-related bank activities [7].

Currently, there are five donor centers designated by the Ministry of Health and Welfare in Korea. Each center regularly conducts its own activities to encourage more volunteers to participate in various bone marrow donation campaigns. Government agencies and private organizations have also made concerted efforts to improve awareness of unrelated HSCT and increase the number of volunteers via advertisements in subway screen doors and media. Nevertheless, only about 12.6% of the general public are aware of the importance of the bone marrow, PBSC, or umbilical cord blood donation program [8].

Herein, the study was conducted to analyze current status of the hematopoietic stem cell bank and review the status of the stem cell registry as well as the activities to improve availability of unrelated potential donors by investigating motivations for joining a registry and potential intervention strategies to increase donor availability.

This study was conducted to help improve understanding of the program for recruiting and coordinating unrelated HSCT donors by analyzing the current status of the HSC bank and its outcomes, with an aim to seek identify ways to establish effective strategies to facilitate registrant enrollment and activate the donation program.

So far, we have made concerted efforts to increase potential donor participation through public campaigns. As a result, a total of 49,037 registrants were listed in the bank from 1994 to 2013, which accounted for 18% of those registered in the KONOS database, and 512 (approximately 11.5%) donors in the bank actually donated their HSCs.

The majority of registrants listed were in their 20s to 30s (83.0%), and were mainly students at the time of registration (82.8%); these observations were consistent with the results of a study conducted by Lee [9], who reported that 49.4% and 31.8% of the total student registrants were students at the time of enrollment and actual donation, respectively. The Match [10] and Laithy [11] also recommended younger donors in order to maximize the odds of success and minimize risks, stressing that the recruitment plan should be focused on younger potential donors or students for all bone marrow coordination centers. University students may be regarded as suitable donors since they typically remain in the database for longer periods of time with a higher possibility to donate.

Analysis of processed or unprocessed donations from 2010 to 2013 revealed agreement and refusal rates for stem cell donation near 50%, which were also consistent with previous reports by Kim et al., who also reported an agreement rate in Korea's unrelated stem cell donors of approximately 50%; however, the agreement rate was lower than that of the advanced countries [12]. Although medical advances in bone marrow transplantation techniques and supportive care have led to improved outcomes and better survival of many long-term HSCT survivors, prejudices and negative responses to HSCT remain unchanged. Among 1,000 Korean people, those willing to donate blood, organ, and bone marrow were 40.6%, 29.2% and 14.3%, respectively. The cited reasons for reluctance to donate bone marrow were 'fear of bone marrow harvest procedures' (52.3%) and 'to avoid body damage' (26.5%) [8].

As far as stem cell donation is concerned, all donors are carefully prescreened to ensure they are healthy and the procedure poses minimal risks to them. However, serious misconceptions about marrow donation remain rampant. Therefore, mitigating doubts and worries about donation will ensure that potential donors are provided with accurate information and knowledge about stem cell donation [8]. All bone marrow coordination centers should make first priority to increase the number of registrants in parallel with intensive training and campaigns to offer donors accurate knowledge and confidence about stem cell donation. In addition, to encourage registrants to maintain their conviction and make donations, the effective follow-up management systems should be established to ensure donation retention and update their contact information.

Analysis of successful donations in terms of registration route showed that higher refusal rates among registrants recruited via University or street campaigns compared to their agreement rates, while 93.0% of recruits who made by direct visits pledged stem cell donation. Another factor that led to successful donation was registrants' positive attitude toward the intended receipt of mails. These results indicated that matched donors full awareness and firm conviction about stem cell donation at the time of registration could be one of the critical factors for successful donation. Only 29.5% of registrants were aware of stem cell-related donation procedures before initiation of a coordination process [9], reflecting that people made their stem donation pledges with little knowledge on the donation process.

Under circumstances where a mature social atmosphere to actively participate in stem cell donation has yet to be created, there are many restrictions to encouraging people to make a donation pledge via direct visits. In addition, it is also difficult to determine whether matched donors will ultimately commit to donation. These issues may be addressed via expansion of donation culture to a social level; to this end, the government and all registry centers should endeavor to enhance public awareness of stem cell donation and play a pivotal role in developing a social atmosphere to respect the final donor who appreciates the value of their donation.

Systematic management should be required after enrollment to ensure that registrants remain enrolled. It was noteworthy that actual donation in less than one year and between one and two years comprised more than half of the cases of donation within five years after enrollment. With this in mind, special training and education campaigns should be developed for those newly recruited within two years after enrollment to ensure their commitment to become a final donor. Furthermore, each bone marrow coordination center should reaffirm the matched donor's commitment to join the life-sharing campaign at the time of enrollment in order to avoid unnecessary expenditure of financial and human resources.

We have spared no efforts to undertake better ex facto management of registrants via diverse methods. Hershberger et al. [13] reported that the critical components of assisting patients in the decision-making process included information about treatment options provided by clinicians, clinicians' attitudes, patients' preferences and values, and in-depth understanding of clinicians about individual circumstances, when patients examined aspects of information processing. Lee [9] also reported that continuous exposure to stem cell-related information is helpful in making final donation decision in registrants after enrollment. These studies indicated that individual attitude of all healthcare providers involved in registration, coordination, and donation procedures may be an influencing factor in assisting registrants in the decision-making process. In this context, healthcare providers must support the registrant's decision and conviction through a sustained linkage system, coupled with more systematic training programs.

With the full recognition of the registrant's information management system to increase the number of registrants and effective use of stem cells since 2011, the KONOS has endeavored to develop an information system to easily identify HLA-matched volunteers [14]. Nevertheless, the number of registrants is substantially smaller than that of recipients registered in the KONOS's waiting list. Unlike other Western multinational countries, Korean people fortunately have a single genetic makeup. Thus, if approximately 1 million donors, one-tenth level of registrants required in the Western countries, are newly recruited from donation-available unrelated volunteers, Korean patients with diseases treatable by HSCT can find a suitably unrelated HLA-matched donors [15].

Under an effective management system to handle all data related to bone marrow donation, including the number of transplants, and prognosis following transplantation, more accurate evaluation should be performed on the HSCT that made substantial contribution to reducing complications and increasing patient survival rates in a variety of hematologic diseases. Further, additional healthcare resources, such as nurses and coordinators, should be recruited to ensure more efficient management of new registrants and stem cell coordination functions. Financial stability should be secured from the government to undertake the current registration program that is directly linked to the lives of 472 leukemia patients each year.

Critical components to activate the program for marrow donation should include proactive government policies and financing, updated versions of efficient registration procedures and related programs, development of donation-related training programs, systematization of follow-up management programs to retain registrant commitment, formation of a social atmosphere to respect the donors and their families, and active efforts of all healthcare providers. Through increased activation of hematopoietic cell donation, among other activities, we hope that individual life-sharing consciousness may be raised to create a donation culture via social consensus.

Our study had a limitation in that we found some difficulty in performing statistical analysis with limited data, as the majority of data owned by the HSC bank was based on the reports provided by the KONOS and other bone marrow coordination centers. Thus, data collection and management should be made in a more detailed and systematic manner.

Average campaign day and the number of new registrants per campaign (2009–2013).

Unrelated Hematopoietic stem cell (HSC) transplantation and the stem cell source (1995–2013).