Department of Vascular Surgery, University Medical Center Utrecht, Utrecht, The Netherlands.
Department of Clinical Genetics, University Medical Center Utrecht, Utrecht, The Netherlands.
PLoS One. 2024 Jul 25;19(7):e0307311. doi: 10.1371/journal.pone.0307311. eCollection 2024.
There is a lack of comprehensive and uniform data on head and neck paragangliomas (HNPGLs), and research is challenging due to its rarity and the involvement of multiple medical specialties. To improve current research data collection, we initiated the Head and Neck Paraganglioma Registry (HNPGL Registry). The aim of the HNPGL Registry is to a) collect extensive data on all HNPGL patients through a predefined protocol, b) give insight in the long term outcomes using patient reported outcome measures (PROMs), c) create uniformity in the diagnostic and clinical management of these conditions, and thereby d) help provide content for future (randomized) research.
The HNPGL Registry is designed as a prospective longitudinal observational registry for data collection on HNPGL patients and carriers of (likely) pathogenic variants causative of HNPGLs. All patients, regardless of the received treatment modality, can be included in the registry after informed consent is obtained. All relevant data regarding the initial presentation, diagnostics, treatment, and follow-up will be collected prospectively in an electronic case report form. In addition a survey containing the EuroQol 5D-5L (EQ-5D-5L), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), Modified Fatigue Impact Scale (MFIS), Short QUestionnaire to Assess Health-enhancing physical activity (SQUASH), Cancer Worry Scale (CWS) and Hospital Anxiety and Depression Scale (HADS) will be sent periodically. The registry protocol was approved by the Medical Ethical Review Board of the University Medical Center Utrecht.
The HNPGL Registry data will be used to further establish the optimal management for HNPGL patients and lay the foundation for guideline recommendations and the outline of future research.
关于头颈部副神经节瘤（HNPGL）的综合且统一的数据较为缺乏，且由于其罕见性和涉及多个医学专业，研究具有一定挑战性。为了改善当前的研究数据收集，我们启动了头颈部副神经节瘤登记处（HNPGL 登记处）。HNPGL 登记处的目的是：a）通过预定义的方案收集所有 HNPGL 患者的广泛数据，b）使用患者报告的结果测量（PROMs）深入了解长期结果，c）为这些病症的诊断和临床管理创建一致性，从而 d）有助于为未来（随机）研究提供内容。
HNPGL 登记处旨在作为数据收集的前瞻性纵向观察性登记处，用于 HNPGL 患者和（可能）致病性变异携带者的 HNPGL 患者的数据收集。在获得知情同意后，无论接受何种治疗方式，所有患者均可纳入登记处。所有关于初始表现、诊断、治疗和随访的相关数据都将在电子病例报告表中前瞻性收集。此外，还将定期发送包含欧洲五维健康量表（EQ-5D-5L）、欧洲癌症研究与治疗组织生活质量问卷（EORTC QLQ-C30）、修正疲劳影响量表（MFIS）、简短健康增强体力活动问卷（SQUASH）、癌症担忧量表（CWS）和医院焦虑抑郁量表（HADS）的调查问卷。登记处方案已获得乌得勒支大学医学中心医学伦理审查委员会的批准。
HNPGL 登记处的数据将用于进一步确定 HNPGL 患者的最佳管理方案，并为指南建议和未来研究的制定奠定基础。
