Process and strategies for patient engagement and outreach in the Sickle Cell Disease (SCD) community to promote clinical trial participation.
Process and strategies for patient engagement and outreach in the Sickle Cell Disease (SCD) community to promote clinical trial participation.
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DOI：
10.1016/j.jnma.2022.01.003
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发表时间：
2022-04
影响因子：
3.3
通讯作者：
Coleman-Cowger, V. H.
中科院分区：
文献类型：
--
作者：
Byrnes, C.;Botello-Harbaum, M.;Clemons, T.;Bailey, L.;Valdes, K. M.;Coleman-Cowger, V. H.
镰状细胞病（SCD）是美国最常见的遗传性血液疾病。治愈镰状细胞倡议（CureSCi）由国家心肺血液研究所（NHLBI）创建，旨在通过加速安全和有前途的遗传疗法的发展，吸引SCD社区和医疗保健提供者，并鼓励利益相关者之间的合作来改善SCD患者的生活。CureSCi是一项以患者为中心的合作研究，包括该计划各个层面的患者。患者参与是一个关键组成部分，特别是在临床试验的开发过程中。描述CureSCi用于让SCD患者参与基因治疗临床试验的过程和策略。CureSCi患者参与团队在2019年进行了9次社区外展访问，每次访问都包括与患者和医疗提供者的单独小组访谈。为每位听众制定了一套指导问题，访谈持续了大约60分钟。患者被问及他们参与临床试验的情况，大约50%的患者参加了试验。SCD患者报告说，他们相信医疗服务提供者会向他们提供与试验相关的信息。医疗提供者强调了SCD的个人、家庭和健康方面，这些方面需要进一步的调查。提供者报告说，病人遇到的障碍，如交通，儿童保育支持，不孕不育，并在医疗保健系统的信任。从社区中吸取的经验教训有助于影响临床试验设计的建议和治愈镰状细胞倡议的关键信息开发。
Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. The Cure Sickle Cell Initiative (CureSCi) was created by the National Heart, Lung and Blood Institute (NHLBI) to improve the lives of people with SCD by accelerating the advancement of safe and promising genetic therapies, engaging the SCD community and healthcare providers, and encouraging collaboration among stakeholders. CureSCi is a collaborative, patient-focused research effort that includes patients at every level of the Initiative. Patient engagement is a key component, particularly during the development of clinical trials. To describe the processes and strategies utilized by the CureSCi to engage individuals living with SCD about genetic therapy clinical trials. The CureSCi Patient Engagement team conducted nine Community Outreach visits in 2019, each of which was structured to include separate group interviews with patients and medical providers. A set of guidance questions was developed for each audience and the interviews lasted approximately 60 minutes. Patients were asked about their participation in a clinical trial, and approximately 50% had participated in a trial. SCD individuals reported trusting their medical provider to provide them with information relevant to trials. Medical providers emphasized the individual, family, and health aspects of SCD that warrant additional investigation. Providers reported barriers encountered by patients as transportation, childcare support, infertility, and trust in the healthcare system. Lessons learned from the community have helped to influence recommendations for clinical trial design and key messaging development for the Cure Sickle Cell Initiative.
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影响因子：
3.8
作者：
Strong H;Mitchell MJ;Goldstein-Leever A;Shook L;Malik P;Crosby LE
通讯作者：
Crosby LE
DOI：
10.1177/1049909119868657
发表时间：
2019-08-08
影响因子：
1.9
作者：
Suarez, Marie L.;Schlaeger, Judith M.;Wilkie, Diana J.
通讯作者：
Wilkie, Diana J.
影响因子：
3.2
作者：
Lebensburger JD;Sidonio RF;Debaun MR;Safford MM;Howard TH;Scarinci IC
通讯作者：
Scarinci IC
DOI：
10.1016/j.bbmt.2020.03.014
发表时间：
2020-06
期刊：
Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation
影响因子：
--
作者：
Cho HL;Kim SYH;Fitzhugh C;Hsieh M;Tisdale J;Grady C
通讯作者：
Grady C
影响因子：
4.7
作者：
Singh, Aditi Puri;Haywood, Carlton, Jr.;Dugas, Andrea Freyer
通讯作者：
Dugas, Andrea Freyer