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Clin Epidemiol. 2019 Jan 10;11:93-99. doi: 10.2147/CLEP.S183268. eCollection 2019.

Completeness of RET testing in patients with medullary thyroid carcinoma in Denmark 1997-2013: a nationwide study.

Author information

1
Department of ORL Head & Neck Surgery and Audiology, Odense University Hospital, Odense, Denmark, jes_mathiesen@yahoo.dk.
2
Department of Clinical Research, University of Southern Denmark, Odense, Denmark, jes_mathiesen@yahoo.dk.
3
Department of Clinical Medicine and Endocrinology, Aalborg University Hospital, Aalborg, Denmark.
4
Steno Diabetes Center North Jutland, Aalborg, Denmark.
5
Department of Internal Medicine and Endocrinology, Aarhus University Hospital, Aarhus, Denmark.
6
Center for Rare Diseases, Aarhus University Hospital, Aarhus, Denmark.
7
Department of Medical Endocrinology, Copenhagen University Hospital, Copenhagen, Denmark.
8
Department of ORL Head and Neck Surgery, Aarhus University Hospital, Aarhus, Denmark.
9
Department of ORL Head & Neck Surgery, Aalborg University Hospital, Aalborg, Denmark.
10
Department of ORL Head & Neck Surgery, Copenhagen University Hospital, Copenhagen, 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.

Abstract

Background:

The completeness of REarranged during Transfection (RET) testing in patients with medullary thyroid carcinoma (MTC) was recently reported as 60%. However, the completeness on a population level is unknown. Similarly, it is unknown if the first Danish guidelines from 2002, recommending RET testing in all MTC patients, improved completeness in Denmark. We conducted a nationwide retrospective cohort study aiming to evaluate the completeness of RET testing in the Danish MTC cohort. Additionally, we aimed to assess the completeness before and after publication of the first Danish guidelines and characterize MTC patients who had not been tested.

Methods:

The study included 200 patients identified from the nationwide Danish MTC cohort 1997-2013. To identify RET tested MTC patients before December 31, 2014, the MTC cohort was cross-checked with the nationwide Danish RET cohort 1994-2014. To characterize MTC patients who had not been RET tested, we reviewed their medical records and compared them with MTC patients who had been tested.

Results:

Completeness of RET testing in the overall MTC cohort was 87% (95% CI: 0.81-0.91; 173/200). In the adjusted MTC cohort, after excluding patients diagnosed with hereditary MTC by screening, completeness was 83% (95% CI: 0.76-0.88; 131/158). Completeness was 88% (95% CI: 0.75-0.95; 42/48) and 81% (95% CI: 0.72-0.88) (89/110) before and after publication of the first Danish guidelines, respectively. Patients not RET tested had a higher median age at diagnosis compared to those RET tested. Median time to death was shorter in those not tested relative to those tested.

Conclusion:

The completeness of RET testing in MTC patients in Denmark seems to be higher than reported in other cohorts. No improvement in completeness was detected after publication of the first Danish guidelines. In addition, data indicate that advanced age and low life expectancy at MTC diagnosis may serve as prognostic indicators to identify patients having a higher likelihood of missing the compulsory RET test.

KEYWORDS:

Denmark; RET testing; medullary thyroid carcinoma

Conflict of interest statement

Disclosure The research salary of Ulla Feldt-Rasmussen is sponsored by an unrestricted research grant from the Novo Nordic Foundation. The authors report no other conflicts of interest in this work.

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