The Multi-Institutional Medullary Thyroid Cancer Collaborative Registry: Can a Rare Tumor Registry Accurately Represent the Real-World Patient Population?
Authors' conclusion
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.
Study context
- Population
- Medullary thyroid cancer (MTC) patients enrolled in Medullary Thyroid Cancer Collaborative Registry (MTCCoRe), Texas Cancer Registry (TCR), California Cancer Registry (CCR) and Surveillance, Epidemiology and End Results (SEER), 1995–2018
- Participants
- 1,416 / 329 / 2,105 / 3,820
- Exposure
- MTCCoRe vs TCR, CCR and SEER
- MTCCoRen = 1,416
- TCRn = 329
- CCRn = 2,105
- SEERn = 3,820
- Outcome
- Demographic and clinical characteristics
Methodological detailsmulti-institutional registry compared with population-based cancer registries
- Multi-institutional registry compared with population-based cancer registries
Main finding
As reported in the abstract
- Age 20-54 years: MTCCoRe 58.0%, TCR 50.2%, CCR 47.2%, SEER 44.8%
- p < 0.0001
- Female: MTCCoRe 55.9%, TCR 61.4%, CCR 59%, SEER 57.5%
- p = 0.3
- Hispanic and Black: MTCCoRe 10.1% and 3.8%, TCR 23.7% and 8.2%, CCR 24.8% and 4.9%, SEER 15.9% and 8.2%
- p < 0.001
- T3-4 and N1: MTCCoRe 28.6% and 49.4%, TCR 12.7% and 32.2%, CCR 18.6% and 32.4%, SEER 24% and 37.8%; more advanced T and N in MTCCoRe
- p < 0.0001
- M1 disease: MTCCoRe 10%, TCR 11.9%, CCR 14.1%, SEER 9.5%
- p < 0.0001
Observational data: associations, not effects.
Further findings
| Outcome | MTCCoRe | TCR | CCR |
|---|---|---|---|
| Systemic therapy | 11.4% | 0.3% | 5.6% |
Original publication
The Multi-Institutional Medullary Thyroid Cancer Collaborative Registry: Can a Rare Tumor Registry Accurately Represent the Real-World Patient Population? Thyroid. Published 26 July 2024. doi:10. 1089/ thy. 2024. 0239
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