Division of Pulmonary Medicine, Boston Children's Hospital, 333 Longwood Avenue, Boston, MA 02115, USA.
Department of Medicine, Division of Pulmonary and Critical Care Medicine, Johns Hopkins University, 5501 Hopkins Bayview Circle, Baltimore, MD 21224, USA.
J Cyst Fibros. 2023 Sep;22(5):830-835. doi: 10.1016/j.jcf.2023.04.015. Epub 2023 May 1.
The daily treatment regimen for an individual with cystic fibrosis (CF) can take more than 2 h to complete, and chronic treatment adherence rates are low. Developing partnerships between CF clinical researchers and the CF community is essential in developing acceptable, feasible, and effective strategies to improve self-management and adherence.
The Success with Therapies Research Consortium (STRC) was formed as a multi-center US collaborative to conduct rigorous research studies of adherence to CF treatments. A multidisciplinary team of researchers from 15 sites, collaborating with members of the CF community, is charged with developing, implementing, and disseminating real-world, patient-centered interventions for people living with CF.
Since 2014, the STRC has conducted 8 studies. The CF community, people with CF (pwCF), and caregivers have come to serve in multiple valuable capacities on the STRC, including as members of the Steering Committee and Co-Principal Investigators. Additionally, while people with CF are irreplaceable participants in STRC studies, their influence, and that of their families and healthcare professionals, extends beyond the traditional research participant role.
Engaging broadly with the CF community is the optimal model for developing interventions to support those living with CF in sustaining daily care. Input and direct involvement from people with CF, their families, and their caregivers has enabled the STRC to advance its mission through innovative clinical research approaches.
个体患有囊性纤维化（CF），其每日的治疗方案需要 2 个多小时才能完成，且慢性治疗依从率较低。因此，CF 临床研究人员与 CF 社区建立伙伴关系，对于制定可接受、可行且有效的策略来改善自我管理和依从性至关重要。
成功治疗研究联盟（STRC）是一个由美国多中心组成的合作组织，致力于开展 CF 治疗依从性的严格研究。一个由 15 个地点的多学科研究人员组成的团队，与 CF 社区的成员合作，负责开发、实施和传播针对 CF 患者的现实、以患者为中心的干预措施。
自 2014 年以来，STRC 已进行了 8 项研究。CF 社区、CF 患者（pwCF）及其护理人员已开始在 STRC 中担任多个有价值的角色，包括指导委员会成员和共同主要研究者。此外，虽然 CF 患者是 STRC 研究中不可或缺的参与者，但他们及其家人和医疗保健专业人员的影响力超出了传统的研究参与者角色。
广泛参与 CF 社区是制定干预措施以支持 CF 患者维持日常护理的最佳模式。CF 患者、他们的家人和护理人员的投入和直接参与，使 STRC 通过创新的临床研究方法推进了其使命。
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