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从镰状细胞疾病实施联盟(SCDIC)跨越站点的镰状细胞患者登记处的有效招募策略。

Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC).

机构信息

Duke University School of Nursing, DUMC 3322, 307 Trent Drive, Durham, NC, 27710, USA.

RTI International, Durham, NC, USA.

出版信息

J Immigr Minor Health. 2021 Aug;23(4):725-732. doi: 10.1007/s10903-020-01102-6. Epub 2020 Oct 9.

DOI:10.1007/s10903-020-01102-6
PMID:33034793
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8032811/
Abstract

Sickle cell disease (SCD) is a genetic disorder predominantly affecting people of African descent and is associated with significant morbidity and mortality. To improve SCD outcomes, the National Heart Lung and Blood Institute funded eight centers to participate in the SCD Implementation Consortium. Sites were required to each recruit 300 individuals with SCD, over 20 months. We aim to describe recruitment strategies and challenges encountered. Participants aged 15-45 years with confirmed diagnosis of SCD were eligible. Descriptive statistics were used to analyze the effectiveness of each recruitment strategy. A total of 2432 participants were recruited. Majority (95.3%) were African American. Successful strategies were recruitment from clinics (68.1%) and affiliated sites (15.6%). Recruitment at community events, emergency departments and pain centers had the lowest yield. Challenges included saturation of strategies and time constraints. Effective recruitment of participants in multi-site studies requires multiple strategies to achieve adequate sample sizes.

摘要

镰状细胞病(SCD)是一种主要影响非洲裔人群的遗传性疾病,与较高的发病率和死亡率相关。为了改善 SCD 的结局,美国国立心肺血液研究所资助了 8 个中心参与 SCD 实施联盟。要求各中心在 20 个月内招募 300 名 SCD 患者。我们旨在描述招募策略和遇到的挑战。参与者为年龄在 15-45 岁之间、确诊患有 SCD 的患者。采用描述性统计分析每种招募策略的有效性。共招募了 2432 名参与者。大多数(95.3%)参与者为非裔美国人。成功的策略包括从诊所(68.1%)和附属站点(15.6%)招募。在社区活动、急诊室和疼痛中心的招募效果最低。挑战包括策略饱和和时间限制。多中心研究中有效招募参与者需要多种策略来达到足够的样本量。

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Commentary: Engaging African Immigrants in Research Experiences and Lessons from the Field.评论:让非洲移民参与研究——来自实地的经验与教训。
Ethn Dis. 2019 Oct 17;29(4):617-622. doi: 10.18865/ed.29.4.617. eCollection 2019 Fall.
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Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: The emergency department providers' perspective.北卡罗来纳州中部照顾镰状细胞病患者的障碍和促进因素:急诊提供者的观点。
PLoS One. 2019 May 7;14(5):e0216414. doi: 10.1371/journal.pone.0216414. eCollection 2019.
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Strategies for recruitment and retention of underrepresented populations with chronic obstructive pulmonary disease for a clinical trial.招募和保留慢性阻塞性肺疾病代表性不足人群参与临床试验的策略。
BMC Med Res Methodol. 2019 Feb 21;19(1):39. doi: 10.1186/s12874-019-0679-y.
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The sickle cell disease implementation consortium: Translating evidence-based guidelines into practice for sickle cell disease.镰状细胞病实施联盟:将基于证据的指南转化为镰状细胞病的实践。
Am J Hematol. 2018 Dec;93(12):E391-E395. doi: 10.1002/ajh.25282. Epub 2018 Oct 17.
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