Department of Surgical Oncology, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
Department of Surgery, University of California San Francisco, San Francisco, California, USA.
Thyroid. 2024 Sep;34(9):1117-1125. doi: 10.1089/thy.2024.0239. Epub 2024 Jul 26.
Large population-based registries, such as the Surveillance, Epidemiology and End Results (SEER) Registry, help in the study of rare tumors, including medullary thyroid cancer (MTC), but lack data to understand the natural history of the disease. The Medullary Thyroid Cancer Collaborative Registry (MTCCoRe) is an exhaustive multi-institutional collection of demographic, clinical, and pathological data. To determine the extent to which MTCCoRe represents the real-world MTC population, we compared the characteristics of patients enrolled in MTCCoRe with patients enrolled in population-based cancer registries. Comparison of demographic and clinical characteristics of MTC patients who were enrolled in MTCCoRe, Texas Cancer Registry (TCR), California Cancer Registry (CCR), and SEER between 1995 and 2018. A total of 1416 patients were identified in MTCCoRe, 329 in TCR, 2105 in CCR, and 3820 in SEER. Percentages of patients 20-54 years in MTCCoRe were 58.0%, 50.2% in TCR, 47.2% in CCR, and 44.8% in SEER ( < 0.0001). About half of the patients were female (55.9% in MTCCoRe, 61.4% in TCR, 59% in CCR, and 57.5% in SEER ( 0.3). Percentages of Hispanic and Black patients differed among cohorts (10.1% and 3.8% for MTCCoRe, 23.7% and 8.2% for TCR, 24.8% and 4.9% in CCR, and 15.9% and 8.2% for SEER, respectively; < 0.001). MTCCoRe patients presented with more advanced T and N classifications than patients in the other registries (MTCCoRe, 28.6% T3-4 and 49.4% N1; TCR, 12.7% and 32.2%; CCR, 18.6% and 32.4%; and SEER, 24% and 37.8%; < 0.0001). Prevalence of M1 disease was 10% in MTCCoRe, 11.9% in TCR, 14.1% in CCR, and 9.5% in SEER ( < 0.0001). In the MTCCoRe, 11.4% underwent systemic therapy (compared with 0.3% in TCR and 5.6% in CCR). The clinicodemographic profile of patients with MTC enrolled in a multi-institutional registry differs from those enrolled in population-based databases, with lower proportions of Hispanic and Black patients but additive data on treatment modalities. Moving forward, MTCCoRe and other registry and clinical trial enrollment efforts should intentionally include underrepresented groups via community engagement techniques, patient stakeholder involvement, and inclusion of languages other than English in study materials to yield more generalizable results and conclusions.
基于人群的大型注册中心，如监测、流行病学和最终结果 (SEER) 注册中心，有助于研究包括甲状腺髓样癌 (MTC) 在内的罕见肿瘤，但缺乏了解疾病自然史的数据。甲状腺髓样癌协作注册中心 (MTCCoRe) 是一个详尽的多机构收集人口统计学、临床和病理数据的集合。为了确定 MTCCoRe 在多大程度上代表了真实世界的 MTC 人群，我们比较了 MTCCoRe 中登记的患者与基于人群的癌症登记处中登记的患者的特征。
1995 年至 2018 年间，MTCCoRe、德克萨斯癌症登记处 (TCR)、加利福尼亚癌症登记处 (CCR) 和 SEER 中登记的 MTC 患者的人口统计学和临床特征比较。
MTCCoRe 中确定了 1416 例患者，TCR 中有 329 例，CCR 中有 2105 例，SEER 中有 3820 例。MTCCoRe 中 20-54 岁的患者比例为 58.0%，TCR 中为 50.2%，CCR 中为 47.2%，SEER 中为 44.8%（<0.0001）。大约一半的患者为女性（MTCCoRe 中为 55.9%，TCR 中为 61.4%，CCR 中为 59%，SEER 中为 57.5%（0.3）。不同队列的西班牙裔和黑人患者比例存在差异（MTCCoRe 为 10.1%和 3.8%，TCR 为 23.7%和 8.2%，CCR 为 24.8%和 4.9%，SEER 为 15.9%和 8.2%；<0.001）。MTCCoRe 患者的 T 和 N 分类比其他登记处的患者更先进（MTCCoRe 为 28.6% T3-4 和 49.4% N1；TCR 为 12.7%和 32.2%；CCR 为 18.6%和 32.4%；SEER 为 24%和 37.8%；<0.0001）。MTCCoRe 中 M1 疾病的患病率为 10%，TCR 中为 11.9%，CCR 中为 14.1%，SEER 中为 9.5%（<0.0001）。在 MTCCoRe 中，11.4%的患者接受了全身治疗（TCR 中为 0.3%，CCR 中为 5.6%）。
多机构注册中心登记的 MTC 患者的临床特征与基于人群的数据库登记的患者不同，西班牙裔和黑人患者的比例较低，但治疗方式的附加数据更多。展望未来，MTCCoRe 和其他登记和临床试验登记工作应通过社区参与技术、患者利益相关者参与以及在研究材料中纳入英语以外的语言，有针对性地包括代表性不足的群体，以产生更具普遍性的结果和结论。
