Biobanking and Biospecimen Research Services, Deeley Research Centre, BC Cancer, Victoria, Canada.
Office of Biobank Education and Research, Department of Pathology and Laboratory Medicine, University of British Columbia, Vancouver, Canada.
Biopreserv Biobank. 2021 Aug;19(4):250-257. doi: 10.1089/bio.2020.0114. Epub 2021 Jan 18.
The permission to contact (PTC) platform is a useful mechanism to increase patient engagement and enrollment into biobanks. It provides biobanks with the ability to select specific patient cohorts and to complete consent to facilitate access to biospecimens and data. In this study, we evaluated consenting costs for a biobank to compile a research cohort based on utilizing a PTC platform to obtain consent as compared with utilizing a prospective consenting approach. In this study, we utilized a PTC platform to conduct an initial selection of potential participants for two breast cancer cohorts and to provide a "referral" to the biobank to recontact these patients to provide consent to access clinical archival biospecimens and associated data. We evaluated the effort, costs, and cohorts compiled by this approach to compare this mechanism with the alternative: compiling the same type of cohorts based on a classic biobank enrollment approach. After initial diagnosis and provision of a PTC up to 12 years before, recontact was possible in 84 of 90 (74%) and 77 of 107 (72%) breast cancer patients for preinvasive (ductal carcinoma [DCIS]) and invasive (triple-negative subtype) cancers. Of those recontacted, consent was completed in 42 of 84 (55%) DCIS patients and 48 of 107 (45%) triple negative breast cancer (TNBC) patients. The total cost of using PTC to recontact patients to compile these two consented cohorts was CAD $26.34 and CAD $20.11 per patient consent, respectively. We have demonstrated the feasibility of utilizing a PTC platform to obtain informed consent from patients for a specific study through referrals provided several years after initial PTC was provided. Depending on the existing biobank operational model and the efficiency of its processes for enrollment and obtaining broad informed consent, the implementation of a PTC platform may be an efficient and cost-effective complementary method for a biobank to enroll patients to develop criteria-specific cohorts to support research.
联系许可(PTC)平台是增加患者参与度和入组生物库的有用机制。它为生物库提供了选择特定患者队列的能力,并完成同意,以方便获取生物样本和数据。在这项研究中,我们评估了生物库编译研究队列的同意成本,该队列是基于利用 PTC 平台获得同意,与利用前瞻性同意方法相比。在这项研究中,我们利用 PTC 平台对两个乳腺癌队列的潜在参与者进行初步选择,并向生物库提供“推荐”,以便重新联系这些患者,同意访问临床存档生物样本和相关数据。我们评估了这种方法的努力、成本和编译的队列,以比较这种机制与替代方案:基于经典生物库入组方法编译相同类型的队列。在初始诊断和提供 PTC 后长达 12 年,对 90 名(74%)和 107 名(72%)乳腺癌患者中的 84 名和 77 名(72%)进行了再联系,用于浸润前(导管癌[DCIS])和浸润性(三阴性亚型)癌症。在重新联系的患者中,42 名(55%)DCIS 患者和 48 名(45%)三阴性乳腺癌(TNBC)患者完成了同意。使用 PTC 重新联系患者以编译这两个同意队列的总费用分别为每位患者同意 26.34 加元和 20.11 加元。我们已经证明了利用 PTC 平台从患者那里获得特定研究知情同意的可行性,这是通过在最初提供 PTC 几年后提供的推荐来实现的。根据现有的生物库运营模式及其入组和获得广泛知情同意的效率,实施 PTC 平台可能是生物库招募患者以开发特定标准队列以支持研究的一种高效、具有成本效益的补充方法。