Database and Registry Research in Thyroid Cancer: Striving for a New and Improved National Thyroid Cancer Database

被引：23

作者：

Mehra, Saral ^{[1
]}

Tuttle, R. Michael ^{[2
]}

Milas, Mira ^{[3
]}

Orloff, Lisa ^{[4
]}

Bergman, Donald ^{[5
]}

Bernet, Victor ^{[6
]}

Brett, Elise ^{[5
]}

Cobin, Rhoda ^{[7
]}

Doherty, Gerard ^{[8
]}

Judson, Benjamin L. ^{[1
]}

Klopper, Joshua ^{[9
]}

Lee, Stephanie ^{[10
]}

Lupo, Mark ^{[11
,12
]}

Machac, Josef ^{[13
]}

Mechanick, Jeffrey I. ^{[13
]}

Randolph, Gregory ^{[14
]}

Ross, Douglas S. ^{[15
]}

Smallridge, Robert ^{[6
]}

Terris, David ^{[16
]}

Tufano, Ralph ^{[17
]}

Alon, Eran ^{[18
]}

Clain, Jason ^{[19
]}

DosReis, Laura ^{[19
]}

Scherl, Sophie ^{[19
]}

Urken, Mark L. ^{[20
]}

机构：

[1] Yale Univ, Sch Med, Dept Surg Otolaryngol, New Haven, CT 06520 USA

[2] Mem Sloan Kettering Canc Ctr, New York, NY 10021 USA

[3] Oregon Hlth & Sci Univ, Portland, OR 97201 USA

[4] Stanford Otolaryngol Head & Neck Surg, Stanford, CA USA

[5] Icahn Sch Med Mt Sinai, Div Endocrinol Diabet & Bone Dis, New York, NY 10029 USA

[6] Mayo Clin Jacksonville, Jacksonville, FL 32224 USA

[7] Icahn Sch Med Mt Sinai, Div Endocrinol Diabet & Bone Dis, Ridgewood, NJ USA

[8] Boston Univ, Med Ctr, Dept Surg, Boston, MA USA

[9] Univ Colorado Denver, Aurora, CO USA

[10] Boston Med Ctr, Dept Med, Sect Endocrinol Diabet & Nutr, Boston, MA USA

[11] Florida State Univ, Coll Med, Sarasota, FL USA

[12] Florida State Univ, Thyroid & Endocrine Ctr Florida, Sarasota, FL USA

[13] Icahn Sch Med Mt Sinai, New York, NY 10029 USA

[14] Massachusetts Eye & Ear Infirm, Boston, MA 02114 USA

[15] Massachusetts Gen Hosp, Boston, MA 02114 USA

[16] Med Coll Georgia, Augusta, GA 30912 USA

[17] Johns Hopkins Sch Med, Baltimore, MD USA

[18] Tel Aviv Univ, Sackler Sch Med, Tel Hashomer, Israel

[19] THANC Fdn, New York, NY USA

[20] Mt Sinai Beth Israel Med Ctr, New York, NY USA

来源：

THYROID | 2015年 / 25卷 / 02期

关键词：

DATA-BASE; PERIOPERATIVE INFORMATION; RISK-GROUP; CARCINOMA; SURVIVAL; PAPILLARY; WELL; COMMUNICATION; OUTCOMES; TRENDS;

D O I：

10.1089/thy.2014.0270

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Background: Health registries have become extremely powerful tools for cancer research. Unfortunately, certain details and the ability to adapt to new information are necessarily limited in current registries, and they cannot address many controversial issues in cancer management. This is of particular concern in differentiated thyroid cancer, which is rapidly increasing in incidence and has many unknowns related to optimal treatment and surveillance recommendations. Summary: In this study, we review different types of health registries used in cancer research in the United States, with a focus on their advantages and disadvantages as related to the study of thyroid cancer. This analysis includes population-based cancer registries, health systems-based cancer registries, and patient-based disease registries. It is important that clinicians understand the way data are collected in, as well as the composition of, these different registries in order to more critically interpret the clinical research that is conducted using that data. In an attempt to address shortcoming of current databases for thyroid cancer, we present the potential of an innovative web-based disease management tool for thyroid cancer called the Thyroid Cancer Care Collaborative (TCCC) to become a patient-based registry that can be used to evaluate and improve the quality of care delivered to patients with thyroid cancer as well as to answer questions that we have not been able to address with current databases and registries. Conclusion: A cancer registry that follows a specific patient, is integrated into physician workflow, and collects data across different treatment sites and different payers does not exist in the current fragmented system of healthcare in the United States. The TCCC offers physicians who treat thyroid cancer numerous time-saving and quality improvement services, and could significantly improve patient care. With rapid adoption across the nation, the TCCC could become a new paradigm for database research in thyroid cancer to improve our understanding of thyroid cancer management.

引用

页码：157 / 168

页数：12

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