Daniels Amy M, Law J Kiely, Green Snyder LeeAnne, Diehl Katharine, Goin-Kochel Robin P, Feliciano Pamela, Chung Wendy K
Simons Foundation, New York, NY, USA.
Kennedy Krieger Institute, Baltimore, MD, USA.
J Clin Transl Sci. 2023 Dec 14;8(1):e64. doi: 10.1017/cts.2023.697. eCollection 2024.
SPARK launched in 2016 to build a US cohort of autistic individuals and their family members. Enrollment includes online consent to share data and optional consent to provide saliva for genomic analysis. SPARK's recruitment strategies include social media and support of a nation-wide network of clinical sites. This study evaluates SPARK's recruitment strategies to enroll a core study population.
Individuals who joined between January 31, 2018, and May 29, 2019 were included in the analysis. Data include sociodemographic characteristics, clinical site referral, the website URL used to join, how the participant heard about SPARK, enrollment completion (online registration, study consents, and returning saliva sample), and completion of the baseline questionnaire. Logistic regressions were performed to evaluate the odds of core participant status (completing enrollment and baseline questionnaire) by recruitment strategy.
In total, 31,715 individuals joined during the study period, including 40% through a clinical site. Overall, 88% completed online registration, 46% returned saliva, and 38% were core participants. Those referred by a clinical site were almost twice as likely to be core participants. Those who directly visited the SPARK website or performed a Google search were more likely to be core participants than those who joined through social media.
Being a core participant may be associated with the "personal" connection and support provided by a clinical site and/or site staff, as well as greater motivation to seek research opportunities. Findings from this study underscore the value of adopting a multimodal recruitment approach that combines social media and a physical presence.
SPARK于2016年启动，旨在建立一个美国自闭症患者及其家庭成员的队列。招募包括在线同意共享数据以及提供唾液用于基因组分析的可选同意。SPARK的招募策略包括社交媒体以及对全国临床站点网络的支持。本研究评估SPARK招募核心研究人群的策略。
分析纳入了2018年1月31日至2019年5月29日期间加入的个体。数据包括社会人口学特征、临床站点转诊、用于加入的网站网址、参与者了解SPARK的方式、招募完成情况（在线注册、研究同意书以及返还唾液样本）以及基线问卷的完成情况。进行逻辑回归以评估按招募策略划分的核心参与者状态（完成招募和基线问卷）的几率。
在研究期间，共有31,715人加入，其中40%通过临床站点加入。总体而言，88%完成了在线注册，46%返还了唾液，38%是核心参与者。由临床站点转诊的人成为核心参与者的可能性几乎是其他人的两倍。直接访问SPARK网站或进行谷歌搜索的人比通过社交媒体加入的人更有可能成为核心参与者。
成为核心参与者可能与临床站点和/或站点工作人员提供的“个人”联系和支持有关，以及寻求研究机会的更大动力。本研究结果强调了采用结合社交媒体和实体存在的多模式招募方法的价值。
