背景:基于人口的大型注册管理机构,比如监视,流行病学和最终结果(SEER)注册有助于研究罕见的肿瘤,包括甲状腺髓样癌(MTC),但缺乏了解疾病自然史的数据。髓质甲状腺癌协作注册(MTCCoRe)是一个详尽的多机构人口统计集合,临床,和病理数据。为了确定MTCCoRe代表现实世界MTC人口的程度,我们比较了MTCCoRe登记患者与基于人群的癌症登记患者的特征.
方法:参加MTCCoRe的MTC患者的人口统计学和临床特征的比较,德州癌症登记处(TCR),加州癌症登记处(CCR),在1995年至2018年之间。
结果:在MTCCoRe中确定了1,416例患者,329在TCR中,2,105在CCR中,和3,820在SEER。MTCCoRe中20-54岁的患者比例为58.0%,50.2%的TCR,CCR中的47.2%,SEER为44.8%(p<0.0001)。大约一半的患者是女性(MTCCoRe的55.9%,TCR占61.4%,59%的CCR,SEER中的57.5%(p=0.3)。西班牙裔和黑人患者的百分比在队列中有所不同(MTCCoRe为10.1%和3.8%,TCR分别为23.7%和8.2%,CCR中24.8%和4.9%,SEER的15.9%和8.2%,分别为;p<0.001)。MTCCoRe患者的T和N分类比其他登记处的患者更先进(MTCCoRe,28.6%T3-4和49.4%N1;TCR,12.7%和32.2%;CCR,18.6%和32.4%;和SEER,24%和37.8%;p<0.0001)。MTCCoRe中M1病的患病率为10%,TCR占11.9%,CCR中的14.1%,和9.5%的SEER(p<0.0001)。在MTCCoRe中,11.4%接受了全身治疗(相比之下,TCR为0.3%,5.6%的CCR)。
结论:在多机构注册中登记的MTC患者的临床人口统计学特征与在基于人群的数据库中登记的患者不同,西班牙裔和黑人患者比例较低,但治疗方式的附加数据。往前走,MTCCore和其他注册和临床试验注册工作应通过社区参与技术有意包括代表性不足的群体,患者利益相关者的参与,并在学习材料中加入英语以外的语言,以产生更普遍的结果和结论。
Background: 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. Methods: 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. Results: 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 (p < 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 (p = 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; p < 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%; p < 0.0001). Prevalence of M1 disease was 10% in MTCCoRe, 11.9% in TCR, 14.1% in CCR, and 9.5% in SEER (p < 0.0001). In the MTCCoRe, 11.4% underwent systemic therapy (compared with 0.3% in TCR and 5.6% in CCR). Conclusions: 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.