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      Incidence and prevalence of sporadic and hereditary MTC in Denmark 1960–2014: a nationwide study

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          Abstract

          Recent studies have shown a significant increase in the temporal trend of medullary thyroid carcinoma (MTC) incidence. However, it remains unknown to which extent sporadic medullary thyroid carcinoma (SMTC) and hereditary MTC (HMTC) affect the MTC incidence over time. We conducted a nationwide retrospective study using previously described RET and MTC cohorts combined with review of medical records, pedigree comparison and relevant nationwide registries. The study included 474 MTC patients diagnosed in Denmark between 1960 and 2014. In the nationwide period from 1997 to 2014, we recorded a mean age-standardized incidence of all MTC, SMTC and HMTC of 0.19, 0.13 and 0.06 per 100,000 per year, respectively. The average annual percentage change in incidence for all MTC, SMTC and HMTC were 1.0 ( P = 0.542), 2.8 ( P = 0.125) and −3.1 ( P = 0.324), respectively. The corresponding figures for point prevalence at January 1, 2015 were 3.8, 2.5 and 1.3 per 100,000, respectively. The average annual percentage change in prevalence from 1998 to 2015 for all MTC, SMTC and HMTC was 2.8 ( P < 0.001), 3.8 ( P < 0.001) and 1.5 ( P = 0.010), respectively. We found no significant change in the incidence of all MTC, SMTC and HMTC possibly due to our small sample size. However, due to an increasing trend in the incidence of all MTC and opposing trends of SMTC (increasing) and HMTC (decreasing) incidence, it seems plausible that an increase for all MTC seen by others may be driven by the SMTC group rather than the HMTC group.

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          Most cited references 47

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          The Danish National Patient Register.

          The Danish National Patient Register (NPR) was established in 1977, and it is considered to be the finest of its kind internationally. At the onset the register included information on inpatient in somatic wards. The content of the register has gradually been expanded, and since 2007 the register has included information on all patients in Danish hospitals. Although the NPR is overall a sound data source, both the content and the definitions of single variables have changed over time. Changes in the organisation and provision of health services may affect both the type and the completeness of registrations. The NPR is a unique data source. Researchers using the data should carefully consider potential fallacies in the data before drawing conclusions.
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            The Danish Cancer Registry.

            The Danish Cancer Registry was founded in 1942. The Cancer Registry contains data on the incidence of cancer in the Danish population since 1943. Validity of the Cancer Registry is secured by the application of manual quality control routines in the daily production of the Cancer Registry, the application of the automated cancer logic, and the use of multiple notifications from different data sources, which also secures a high degree of completeness. In 2008 the Cancer Registry finished a process of modernisation where reporting became electronic through integration with the patient administrative systems and manual coding was partly replaced by an automatic coding logic.
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              Medullary thyroid cancer: management guidelines of the American Thyroid Association.

              Inherited and sporadic medullary thyroid cancer (MTC) is an uncommon and challenging malignancy. The American Thyroid association (ATA) chose to create specific MTC Clinical Guidelines that would bring together and update the diverse MTC literature and combine it with evidence-based medicine and the knowledge and experience of a panel of expert clinicians. Relevant articles were identified using a systematic PubMed search and supplemented with additional published materials. Evidence-based recommendations were created and then categorized using criteria adapted from the United States Preventive Services Task Force, Agency for Healthcare Research and Quality. Clinical topics addressed in this scholarly dialog included: initial diagnosis and therapy of preclinical disease (including RET oncogene testing and the timing of prophylactic thyroidectomy), initial diagnosis and therapy of clinically apparent disease (including preoperative testing and imaging, extent of surgery, and handling of devascularized parathyroid glands), initial evaluation and treatment of postoperative patients (including the role of completion thyroidectomy), management of persistent or recurrent MTC (including the role of tumor marker doubling times, and treatment of patients with distant metastases and hormonally active metastases), long-term follow-up and management (including the frequency of follow-up and imaging), and directions for future research. One hundred twenty-two evidence-based recommendations were created to assist in the clinical care of MTC patients and to share what we believe is current, rational, and optimal medical practice.
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                Author and article information

                Affiliations
                [1 ]Department of ORL Head & Neck Surgery Odense University Hospital, Odense, Denmark
                [2 ]Department of Clinical Research University of Southern Denmark, Odense, Denmark
                [3 ]Department of Clinical Medicine and Endocrinology Aalborg University Hospital, Aalborg, Denmark
                [4 ]Department of Internal Medicine and Endocrinology Aarhus University Hospital, Aarhus, Denmark
                [5 ]Center for Rare Diseases Aarhus University Hospital, Aarhus N, Denmark
                [6 ]Department of Medical Endocrinology Copenhagen University Hospital, Copenhagen, Denmark
                [7 ]Department of ORL Head & Neck Surgery Aarhus University Hospital, Aarhus, Denmark
                [8 ]Department of ORL Head & Neck Surgery Aalborg University Hospital, Aalborg, Denmark
                [9 ]Department of ORL Head & Neck Surgery Copenhagen University Hospital, Copenhagen, Denmark
                [10 ]Department of ORL Head & Neck Surgery Zealand University Hospital, Køge, Denmark
                [11 ]Department of Oncology Herlev Hospital, Herlev, Denmark
                [12 ]Odense Patient data Explorative Network (OPEN) Odense University Hospital, Odense, Denmark
                [13 ]Department of Molecular Medicine Aarhus University Hospital, Aarhus, Denmark
                [14 ]Center for Genomic Medicine Copenhagen University Hospital, Copenhagen, Denmark
                [15 ]Department of Clinical Genetics Odense University Hospital, Odense, Denmark
                Author notes
                Correspondence should be addressed to J S Mathiesen: jes_mathiesen@ 123456yahoo.dk
                Journal
                Endocr Connect
                Endocr Connect
                EC
                Endocrine Connections
                Bioscientifica Ltd (Bristol )
                2049-3614
                June 2018
                14 May 2018
                : 7
                : 6
                : 829-839
                EC180157
                10.1530/EC-18-0157
                6000757
                29760189
                © 2018 The authors

                This work is licensed under a Creative Commons Attribution 4.0 International License.

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