Database and registry research in thyroid cancer

Striving for a new and improved national thyroid cancer database

Saral Mehra, R. Michael Tuttle, Mira Milas, Lisa Orloff, Donald Bergman, Victor Bernet, Elise Brett, Rhoda Cobin, Gerard Doherty, Benjamin L. Judson, Joshua Klopper, Stephanie Lee, Mark Lupo, Josef Machac, Jeffrey I. Mechanick, Gregory Randolph, Douglas S. Ross, Robert Smallridge, David J Terris, Ralph Tufano & 5 others Eran Alon, Jason Clain, Laura Dosreis, Sophie Scherl, Mark L. Urken

Research output: Contribution to journalReview article

14 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)157-168
Number of pages12
JournalThyroid
Volume25
Issue number2
DOIs
StatePublished - Jan 1 2015

Fingerprint

Thyroid Neoplasms
Registries
Databases
Research
Neoplasms
Health
Physicians
Workflow
Quality of Health Care
Disease Management
Quality Improvement
Patient Care
Delivery of Health Care

ASJC Scopus subject areas

  • Endocrinology, Diabetes and Metabolism
  • Endocrinology

Cite this

Mehra, S., Tuttle, R. M., Milas, M., Orloff, L., Bergman, D., Bernet, V., ... Urken, M. L. (2015). Database and registry research in thyroid cancer: Striving for a new and improved national thyroid cancer database. Thyroid, 25(2), 157-168. https://doi.org/10.1089/thy.2014.0270

Database and registry research in thyroid cancer : Striving for a new and improved national thyroid cancer database. / Mehra, Saral; Tuttle, R. Michael; Milas, Mira; Orloff, Lisa; Bergman, Donald; Bernet, Victor; Brett, Elise; Cobin, Rhoda; Doherty, Gerard; Judson, Benjamin L.; Klopper, Joshua; Lee, Stephanie; Lupo, Mark; Machac, Josef; Mechanick, Jeffrey I.; Randolph, Gregory; Ross, Douglas S.; Smallridge, Robert; Terris, David J; Tufano, Ralph; Alon, Eran; Clain, Jason; Dosreis, Laura; Scherl, Sophie; Urken, Mark L.

In: Thyroid, Vol. 25, No. 2, 01.01.2015, p. 157-168.

Research output: Contribution to journalReview article

Mehra, S, Tuttle, RM, Milas, M, Orloff, L, Bergman, D, Bernet, V, Brett, E, Cobin, R, Doherty, G, Judson, BL, Klopper, J, Lee, S, Lupo, M, Machac, J, Mechanick, JI, Randolph, G, Ross, DS, Smallridge, R, Terris, DJ, Tufano, R, Alon, E, Clain, J, Dosreis, L, Scherl, S & Urken, ML 2015, 'Database and registry research in thyroid cancer: Striving for a new and improved national thyroid cancer database', Thyroid, vol. 25, no. 2, pp. 157-168. https://doi.org/10.1089/thy.2014.0270
Mehra, Saral ; Tuttle, R. Michael ; Milas, Mira ; Orloff, Lisa ; Bergman, Donald ; Bernet, Victor ; Brett, Elise ; Cobin, Rhoda ; Doherty, Gerard ; Judson, Benjamin L. ; Klopper, Joshua ; Lee, Stephanie ; Lupo, Mark ; Machac, Josef ; Mechanick, Jeffrey I. ; Randolph, Gregory ; Ross, Douglas S. ; Smallridge, Robert ; Terris, David J ; Tufano, Ralph ; Alon, Eran ; Clain, Jason ; Dosreis, Laura ; Scherl, Sophie ; Urken, Mark L. / Database and registry research in thyroid cancer : Striving for a new and improved national thyroid cancer database. In: Thyroid. 2015 ; Vol. 25, No. 2. pp. 157-168.
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abstract = "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.",
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AU - Bergman, Donald

AU - Bernet, Victor

AU - Brett, Elise

AU - Cobin, Rhoda

AU - Doherty, Gerard

AU - Judson, Benjamin L.

AU - Klopper, Joshua

AU - Lee, Stephanie

AU - Lupo, Mark

AU - Machac, Josef

AU - Mechanick, Jeffrey I.

AU - Randolph, Gregory

AU - Ross, Douglas S.

AU - Smallridge, Robert

AU - Terris, David J

AU - Tufano, Ralph

AU - Alon, Eran

AU - Clain, Jason

AU - Dosreis, Laura

AU - Scherl, Sophie

AU - Urken, Mark L.

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N2 - 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.

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