Improving the Availability of Younger Unrelated Hematopoietic Stem Cell Donors

 描述(申请人提供)：18-30岁的年轻的潜在无关造血干细胞(HSC)捐赠者既是临床上最可取的，也是在初步匹配需要移植HSC的患者后最不能捐献的。拟议调查的最终目标是改善这一年轻捐赠者群体的可获得性。拟议的研究侧重于18-30岁的个人，将(A)确定这一群体与较年长的HSC登记成员之间的差异，(B)确定较年轻登记成员中与初步匹配患者后选择退出登记有关的因素，以及(C)产生和评估干预策略的可接受性和可取性，以改善年轻捐赠者的可获得性。在群体内，按性别和种族/族裔进行比较，并将年轻的新招募人员与年龄在35-44岁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，使我们能够定制我们潜在的干预战略。我们的合作伙伴 进行调查的是国家骨髓捐赠者计划(NMDP)，该计划管理着世界上最大的无关HSC捐赠者登记(1100万英镑)，我们与这些捐赠者有既定的合作历史。这项调查很重要，因为(A)造血干细胞移植现在是威胁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没有血缘关系的捐赠者那里寻求造血干细胞，(C)年轻捐赠者是临床上最受欢迎的捐赠者群体，以及(D)年轻捐赠者在被要求捐献时无法获得干细胞的比率最高。这一研究计划的创新方面包括：(A)这将是第一次系统调查，重点是更好地了解年轻的潜在捐赠者群体，他们在临床上是可取的，但更难获得；(B)我们包括社区参与、媒体和技术使用、冲动和父母影响等变量，这些变量以前没有包括在这类研究中，但可能对年轻潜在捐赠者的捐赠相关决定越来越重要(C)这些特征与年龄、性别、种族/民族和捐赠决定的不同关联尚未得到研究，(D)这将是导致有系统地制定干预战略以改善年轻的高血球干细胞捐赠者可获得性的第一次调查。这项研究的目的是：(A)使用基于网络的调查来定量描述新招募的年轻捐赠者在五类关键变量上的情况，并按性别和种族/族裔检查这一队列中的差异以及这一队列与新招募的老年捐赠者(n=1248)之间的差异；(B)使用基于网络的调查来定量比较将患者配对后继续捐献的年轻登记成员与那些选择退出登记的人(n=1 440)，以及(C)生成并定性评估改善年轻捐赠者可获得性的潜在干预策略。NMDP大力支持这项调查，并致力于利用研究结果改进这一极具价值的年轻登记册成员群体的征聘和管理战略。

 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.