Improving the Availability of Younger Unrelated Hematopoietic Stem Cell Donors

 描述（由申请人提供）：年龄在18-30岁之间的年轻的潜在无关造血干细胞（HSC）供体在临床上是最理想的，并且在初步匹配需要HSC移植的患者后最不适合捐献。拟议调查的最终目标是提高这一年轻供体群体的可用性。拟议的研究重点关注18-30岁的个体，并将（a）确定该组与老年HSC登记研究成员之间的差异，（B）确定年轻登记研究成员中与初步匹配患者后选择退出登记研究相关的因素，以及（c）生成并评估干预策略的可接受性和可取性，以提高年轻供体的可用性。在组内，按性别和种族/民族进行比较，并将年轻的新招募人员与年龄在35-44岁之间的老年登记成员的匹配样本进行比较，将提供细微差别的信息，使我们能够调整潜在的干预策略。我们的合作伙伴 国家骨髓捐献者计划（NMDP）负责管理世界上最大的非亲缘造血干细胞捐献者登记（> 1100万），我们与他们有着悠久的合作历史。这项研究很重要，因为（a）HSC移植现在是危及生命的血液疾病的首选治疗方法，（B）越来越多的患者必须从无关供体寻求HSC，（c）年轻供体是临床上最理想的供体群体，（d）年轻供体在被要求捐献时的不可用率最高。这项研究计划的创新方面包括：（a）这将是第一次系统的调查，重点是更好地了解一群年轻的潜在捐赠者，他们在临床上都是可取的，但不太容易获得，（B）我们包括社区参与，媒体和技术使用，冲动，和父母的影响，以前没有包括在这种类型的研究，但可能越来越重要的捐赠相关的决定，年轻的潜在捐助者（c）这些特征与年龄、性别、种族/民族和捐赠决定的差异性关联尚未被研究，并且（d）这将是第一个导致系统地发展干预策略以提高年轻HSC捐赠者可用性的研究。研究的目的是（a）使用基于网络的调查来定量描述新招募的年轻供体的五类关键变量，并检查该队列中性别和种族/民族的差异以及该队列与新招募供体的老年队列之间的差异（n= 1，248），（B）使用基于网络的调查来定量比较在匹配患者后继续捐献的年轻登记成员与选择-（c）制定和定性评价潜在的干预战略，以提高年轻供体的可用性。NMDP强烈支持这项调查，并致力于利用研究结果来改善这组非常有价值的年轻登记研究成员的招募和管理策略。

 DESCRIPTION (provided by applicant): Younger potential unrelated hematopoietic stem cell (HSC) donors aged 18-30 are both the most clinically desirable and least available to donate after having preliminarily matched a patient in need of an HSC transplant. The ultimate goal of the proposed investigation is to improve availability of this younger donor group. The proposed study is focused on individuals aged 18-30 and will (a) identify differences between this group and older HSC registry members, (b) identify factors in younger registry members that are associated with opting out of the registry after having preliminarily matched a patient, and (c) generate and evaluate the acceptability and desirability of intervention strategies to improve younger donor availability. Within group comparisons by sex and race/ethnicity and comparison of younger new recruits to a matched sample of older registry members aged 35-44 will provide nuanced information that will allow us to tailor our potential intervention strategies. Our partner for the investigation is the National Marrow Donor Program (NMDP) which manages the largest registry of unrelated HSC donors in the world (> 11 million) and with whom we have an established history of collaboration. This investigation is important because (a) HSC transplantation is now a preferred treatment for life-threatening diseases of the blood, (b) increasing numbers of patients must seek HSCs from unrelated donors, (c) younger donors are the most clinically desirable group of donors, and (d) younger donors have the highest rates of unavailability when asked to donate. Innovative aspects of this research program include that (a) this will be the first systematic investigation focused on better understanding a younger group of potential donors who are both clinically desirable and less available, (b) we include variables such as community engagement, media and technology use, impulsivity, and parental influence which have not been previously included in this type of research but may be increasingly important to donation-related decisions among younger potential donors (c) the differential association of these characteristics with age, sex, race/ethnicity, and donation decisions have not been examined, and (d) this will be the first investigation to lead to the systematic development of intervention strategies to improve availability of younger HSC donors. Study aims are to (a) use web-based surveys to quantitatively describe younger newly recruited donors on five key classes of variables and to examine differences within this cohort by sex and race/ethnicity and between this cohort and an older cohort of newly recruited donors (n=1,248), (b) use web-based surveys to quantitatively compare younger registry members who continue toward donation after matching a patient with those who opt-out of the registry (n=1,440), and (c) to generate and qualitatively evaluate potential intervention strategies to improve younger donor availability. The NMDP strongly supports this investigation and is committed to using study findings to improve recruitment and management strategies for this group of highly valuable younger registry members.