Aggarwal Sumit, Rulu Peteneinuo, Tabassum Heena
Descriptive Research Division, Indian Council of Medical Research, New Delhi, India.
Non-Communicable Diseases, Division, Indian Council of Medical Research, New Delhi, India.
J Family Med Prim Care. 2024 Nov;13(11):4901-4909. doi: 10.4103/jfmpc.jfmpc_264_24. Epub 2024 Nov 18.
Health registries are instrumental in tracking trends in the number of people with diseases, monitoring treatment options, and assessing health outcomes. This research examines the challenges of establishing and maintaining a venous thromboembolism (VTE) registry in the Indian context.
A mixed-method approach with purposive sampling was conducted to capture the challenges faced by individuals playing key roles in the establishment and operation of the national registry on VTE. This study focused on 10 questions related to technological infrastructure, resource optimization, data collection and management, coordination and collaboration, regulatory compliance, and political influences and were documented using a semi-structured questionnaire and telephonic interviews.
Technological, recruitment, and follow-up challenges were prominently highlighted with issues related to data entry, system glitches, changes to the data entry forms, and potential participant reluctance.
Findings from this study highlight the multifaceted challenges experienced during the establishment of a national registry on VTE. By integrating insights from our findings into suggestions, this discussion reflects the specific challenges faced by the research project and offers evidence-based strategies for mitigating these challenges.
健康登记系统有助于追踪患病人数的趋势、监测治疗方案以及评估健康结果。本研究探讨了在印度建立和维护静脉血栓栓塞症（VTE）登记系统所面临的挑战。
采用目的抽样的混合方法，以了解在国家VTE登记系统的建立和运营中发挥关键作用的个人所面临的挑战。本研究聚焦于与技术基础设施、资源优化、数据收集与管理、协调与合作、法规遵从性以及政治影响相关的10个问题，并通过半结构化问卷和电话访谈进行记录。
技术、招募和随访方面的挑战尤为突出，涉及数据录入、系统故障、数据录入表格变更以及潜在参与者的抵触情绪等问题。
本研究结果突出了建立国家VTE登记系统过程中所经历的多方面挑战。通过将研究结果中的见解融入建议，本讨论反映了该研究项目所面临的具体挑战，并提供了基于证据的应对策略。
