Database and registry research in thyroid cancer: Striving for a new and improved national thyroid cancer database

Thyroid

Volumn 25, Issue 2, 2015, Pages 157-168

  Mehra, Saral ^a   Tuttle, R Michael ^b   Milas, Mira ^c   Orloff, Lisa ^d   Bergman, Donald ^e   Bernet, Victor ^f   Brett, Elise ^e   Cobin, Rhoda ^e   Doherty, Gerard ^g   Judson, Benjamin L ^a   Klopper, Joshua ^h   Lee, Stephanie ⁱ   Lupo, Mark ^j   Machac, Josef ^e   Mechanick, Jeffrey I ^e   Randolph, Gregory ^k   Ross, Douglas S ^l   Smallridge, Robert ^f   Terris, David ^m   Tufano, Ralph ⁿ   Alon, Eran ^o   Clain, Jason ^p   Dosreis, Laura ^p   Scherl, Sophie ^p   Urken, Mark L ^q   more..

^a YALE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b MEMORIAL SLOAN KETTERING CANCER CENTER   (United States)

^c OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^d STANFORD UNIVERSITY   (United States)

^e MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^f MAYO CLINIC   (United States)

^g BOSTON UNIVERSITY MEDICAL CENTER   (United States)

^h UNIVERSITY OF COLORADO   (United States)

ⁱ BOSTON MEDICAL CENTER   (United States)

^j FLORIDA STATE UNIVERSITY COLLEGE OF MEDICINE   (United States)

^k MASSACHUSETTS EYE AND EAR INFIRMARY   (United States)

^l MASSACHUSETTS GENERAL HOSPITAL   (United States)

^m MEDICAL COLLEGE OF GEORGIA   (United States)

ⁿ JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^o TEL AVIV UNIVERSITY   (Israel)

^p THANC Foundation   (United States)

^q BETH ISRAEL MEDICAL CENTER   (United States)

more..

Author keywords

[No Author keywords available]

Indexed keywords

BREAST CANCER; CANCER INCIDENCE; CANCER REGISTRY; CANCER RESEARCH; CLINICAL DECISION MAKING; CLINICAL RESEARCH; DATA BASE; DIFFERENTIATED THYROID CANCER; HASHIMOTO DISEASE; HUMAN; OVERALL SURVIVAL; PRACTICE GUIDELINE; PRIORITY JOURNAL; REVIEW; THYROID CANCER; THYROIDECTOMY; EPIDEMIOLOGICAL MONITORING; FACTUAL DATABASE; INCIDENCE; REGISTER; RESEARCH; THYROID NEOPLASMS;

DATABASES, FACTUAL; EPIDEMIOLOGICAL MONITORING; HUMANS; INCIDENCE; REGISTRIES; RESEARCH; THYROID NEOPLASMS;

EID: 84922558757     PISSN: 10507256     EISSN: 15579077     Source Type: Journal    
DOI: 10.1089/thy.2014.0270     Document Type: Review

References (37)

1. National Cancer Registrars Association. Cancer Registrar FAQ. Available at: www.ncra-usa.org/i4a/pages/index.cfm? pageid = 3301#sub2 (accessed December 31, 2013).
2. National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology. Thyroid Carcinoma. Version 1.2013. NCCN.org (accessed March 1, 2013).
3. American Thyroid Association (ATA) 2009 The American Thyroid Association Guidelines Taskforce on Thyroid Nodules and Differentiated Thyroid Cancer. Revised American Thyroid Association Management Guidelines for Patients with Thyroid Nodules and Differentiated Thyroid Cancer. Thyroid 19:1-48.
4. Cobin RH, Gharib H, Thyroid Carcinoma Task Force 2001 AACE/AAES Medical/Surgical Guidelines For Clinical Practice: Management of Thyroid Carcinoma. Endocr Pract 7:202-220.
5. Jensen OM, Parkin R, MacLennan R, Muir CS, Skeet RG (eds) 1991 Cancer Registration, Principles and Methods. International Agency for Research on Cancer, Lyon.
6. Harlan LC, Hankey BF 2003 The surveillance, epidemiology, and end-results program database as a resource for conducting descriptive epidemiologic and clinical studies. J Clin Oncol 21:2232-2233.
7. Mitchell I, Livingston EH, Chang AY, Holt S, Snyder WH 3rd, Lingvay I, Nwariaku FE 2007 Trends in thyroid cancer demographics and surgical therapy in the United States. Surgery 142:823-828.
8. Roman S, Lin R, Sosa JA 2006 Prognosis of medullary thyroid carcinoma: demographic, clinical, and pathologic predictors of survival in 1252 cases. Cancer 107:2134-2142.
9. Hogan AR, Zhuge Y, Perez EA, Koniaris LG, Lew JI, Sola JE 2009 Pediatric thyroid carcinoma: incidence and outcomes in 1753 patients. J Surg Res 156:167-172.
10. Kebebew E, Greenspan FS, Clark OH, Woeber KA, McMillan A 2005 Anaplastic thyroid carcinoma. Treatment outcome and prognostic factors. Cancer 103:1330-1335.
11. Chen AY, Levy L, Goepfert H, Brown BW, Spitz MR, Vassilopoulou-Sellin R 2001 The development of breast carcinoma in women with thyroid carcinoma. Cancer 92: 225-231.
12. Larson SD, Jackson LN, Riall TS, Uchida T, Thomas RP, Qiu S, Evers BM 2007 Increased incidence of welldifferentiated thyroid cancer associated with Hashimoto thyroiditis and the role of the PI3k/Akt pathway. J Am Coll Surg 204:764-773.
13. Bhattacharyya N 2003 A population-based analysis of survival factors in differentiated and medullary thyroid carcinoma. Otolaryngol Head Neck Surg 128:115-123.
14. Podnos YD, Smith D, Wagman LD, Ellenhorn JDI 2005 The implications of lymph node metastasis on survival in patients with well-differentiated thyroid cancer. Am Surg 71:731-734.
15. Zaydfudim V, Feurer ID, Griffin MR, Phay JE 2008 The impact of lymph node involvement on survival in patients with papillary and follicular thyroid carcinoma. Surgery 144:1070-1077.
16. Haigh PI, Urbach DR, Rotstein LE 2004 Extent of thyroidectomy is not a major determinant of survival in low-or highrisk papillary thyroid cancer. Ann Surg Oncol 12:81-89.
17. Fritz A, Ries L 1998 SEER Extent of Disease-1988. Codes and Coding Instructions. Third edition. National Cancer Institute. Available at: http://seer.cancer.gov/archive/manuals/ EOD10Dig.pub.pdf (accessed December 31, 2013).
18. Hay ID, Bergstralh EJ, Goellner JR, Ebersold JR, Grant CS 1993 Predicting outcome in papillary thyroid carcinoma: development of a reliable prognostic scoring system in a cohort of 1779 patients surgically treated at one institution during 1940 through. Surgery 114:1050-1057.
19. Cady B, Ross RL 1988 An expanded view of risk group definition in differentiated thyroid carcinoma. Surgery 104:947-953.
20. Hay ID, Grant CS, Taylor WF, McConahey WM 1987 Ipsilateral lobectomy versus bilateral lobar resection in papillary thyroid carcinoma: a retrospective analysis of surgical outcome using a novel prognostic scoring system. Surgery 102:1088-1095.
21. Shaha AR, Loree TR, Shah JP 1994 Intermediate risk group for differentiated carcinoma of the thyroid. Surgery 116: 1036-1041.
22. Jonklaas J, Sarlis NJ, Litofsky D, Ain KB, Bigos ST 2006 Outcomes of patients with differentiated thyroid carcinoma following initial therapy. Thyroid 16:1229-1242.
23. Sherman SI, Brierley JD, Sperling M, Ain KB, Bigos ST, Cooper DS, Haugen BR, Ho M, Klein I, Ladenson PW, Robbins J, Ross DS, Specker B, Taylor T, Maxon HR 3rd; National Thyroid Cancer Treatment Cooperative Study Registry Group 1998 Prospective multicenter study of thyroid carcinoma treatment: initial analysis of staging and outcome. Cancer 83:1012-1021.
24. Lerro CC, Robbins AS, Phillips JL, Stewart AK 2013 Comparison of cases captured in the National Cancer Data Base with those in population-based central cancer registries. Ann Surg Oncol 20:1759-1765.
25. Bilimoria KY, Stewart AK, Winchester DP, Ko CY 2008 The National Cancer Data Base: a powerful initiative to improve cancer care in the United States. Ann Surg Oncol 15:683-690.
26. American College of Surgeons. NCDB Public Benchmarks- Site by Stage of Top 11 (out of 11) Sites Cancers Diagnosed in 2000 to 2011. Available at: https://cromwell.facs.org/ BMarks/BMPub/ver10/Docs/ (accessed October 17, 2014).
27. Hundahl SA, Fleming ID, Fremgen AM, Menck HR 1998 A National Cancer Data Base report on 53,856 cases of thyroid carcinoma treated in the U.S., 1985-1995. Cancer 83:2638-2648.
28. Randolph GW, Duh QY, Heller KS, LiVolsi VA, Mandel SJ, Steward DL, Tufano RP, Tuttle RM; American Thyroid Association Surgical Affairs Committee s Taskforce on Thyroid Cancer Nodal Surgery 2012 The prognostic significance of nodal metastases from papillary thyroid carcinoma can be stratified based on the size and number of metastatic lymph nodes, as well as the presence of extranodal extension. Thyroid 22:1144-1152.
29. Seethala RR, Asa SL, Cart SE, Hodak SP, McHugh JB, Shah J, Thompson LDR, Nikiforov YE. Protocol for the examination of specimens from patients with carcinomas of the thyroid gland. Version Thyroid 3.1.0.0 College of American Pathologists. Available at: www.cap.org/apps/ docs/committees/cancer/cancer-protocols/2014/Thyroid- 14Protocol-3100.pdf (accessed September 13, 2014).
30. Veeranki SP, Brooks B, Bolick S, Robichaux M, Aldrich T 2010 Quality of care: the role of disease registries. J Regist Manage 37:132-136.
31. Stotter A, Bright N, Silcocks PB, Botha JL 2000 Effect of improved data collection on breast cancer incidence and survival: reconciliation of a registry with a clinical database. Br Med J 321:214.
32. Navaneethan SD, Jolly SE, Schold JD, Arrigain S, Saupe W, Sharp J, Lyons J, Simon JF, Schreiber MJ Jr, Jain A, Nally JV Jr 2011 Development and validation of an electronic health record-based chronic kidney disease registry. Clin J Am Soc Nephrol 6:40-49.
33. Simard EP, Ward EM, Siegel R, Jemal A 2012 Cancers with increasing incidence trends in the United States: 1999 through 2008. Cancer J Clin 62:118-128.
34. Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, Table 26.5 Cancer of the Thyroid (invasive), Age Adjusted SEER Incidence Rates by Year, Race, and Sex.
35. Mehra S, Tuttle RM, Bergman D, Bernet V, Brett E, Cobin R, Doherty G, Klopper J, Lee S, Machac J, Milas M, Mechanick JI, Orloff L, Randolph G, Ross DS, Smallridge R, Terris D, Tufano R, Alon E, Clain J, Dos Reis L, Scherl S, Urken ML 2014 Improving the quality of thyroid cancer care: how does the Thyroid Cancer Care Collaborative cross the Institute of Medicine s Quality Chasm? Thyroid 24:615-624.
36. Carty SE, Doherty GM, Inabnet WB 3rd, Pasieka JL, Randolph GW, Shaha AR, Terris DJ, Tufano RP, Tuttle RM; Surgical Affairs Committee Of The American Thyroid Association 2012 American Thyroid Association statement on the essential elements of interdisciplinary communication of perioperative information for patients undergoing thyroid cancer surgery. Thyroid 22:395-399.
37. Dos Reis LL, Tuttle RM Md, Alon E, Bergman DA, Bernet V, Brett EM, Cobin R, Doherty G, Harris JR, Klopper J, Lee SL, Lupo M, Milas M, Machac J, Mechanick JI, Orloff LA, Randolph G, Ross DS, Smallridge RC, Terris DJ, Tufano RP, Mehra S, Scherl S, Clain JB, Urken ML 2014 What is the gold standard for comprehensive interinstitutional communication of perioperative information for thyroid cancer patients? A comparison of existing electronic health records with the current ATA recommendations. Thyroid 24:1466-1472.